This week at PHI ...

August 26, 2014

Polio survivors in Sierra Leone describe their Polio Challenge Association. PHI asked them to tell us more about the organization and their needs – please seeCan you help? Pass this request along.

August 19, 2014

Are you an alumnus of the Bay Cliff Post-Polio Wellness Retreat (Big Bay, Michigan)?  Individuals who have attended prior retreats at Bay Cliff are invited to a Post-Polio Wellness Update on Monday, October 13-Thursday October 16, 2014.
For information, if you have not already received it, contact

December 16, 2013

MAY 31–JUNE 3, 2014

Promoting Healthy Ideas, PHI's 11th International Conference

Latest Program Information

Registering for Promoting Healthy Ideas: PHI’s 11th International Conference

Reserving a Hotel Room

Preliminary Information

From Prior Weeks at PHI ...

October 2, 2013

It is has come to our attention that several of our Members received blank emails instead of the PHI Membership Memo for September. We apologize for this error and have corrected the issue for future emails. If you did not receive the Memo, you may view it online here.

Promoting Healthy Ideas, PHI's 11th International Conference

Preliminary Information

Latest Program Information (updated 9-6-13)

Reserving a Hotel Room (updated 9-2-13)

Registration for the conference is unavailable at this time. We will keep you informed of any changes through the newsletter, Membership Memo emails, and Facebook. Continue to check back here periodically for updates.

September 2, 2013

Promoting Healthy Ideas, PHI's 11th International Conference

Preliminary Information

Latest Program Information (updated 9-6-13)

Reserving a Hotel Room (updated 9-2-13)

Registration for the conference is unavailable at this time. We will keep you informed of any changes through the newsletter, Membership Memo emails, and Facebook. Continue to check back here periodically for updates.

July 29, 2013

Promoting Healthy Ideas, PHI's 11th International Conference Preliminary Information

July 24, 2013

IVUN's Ninth Educational Conference Call

Wednesday, July 31, 2013 at 1:00 PM CDT
My Continuing Medical Education as a Post-Polio Patient/Physician
Bonnie Jo Grieve, MD
Reservations are required to be on the call. To reserve your spot, contact Reservations are on a first-come, first-served basis.

July 10, 2013

Professor finds never-before-seen film footage of President Franklin D. Roosevelt ...

photo of red Jazzy 600June 20, 2013

Jazzy 600 (see photo) with reclining feature in very good condition is available in the St. Louis area for $1,500.

Please contact or 314-534-0475 if interested, and we will connect you with the seller.

June 13, 2013

Lose power during a recent storm? Check out the batteries that can run for 16 hours or 24 hours without a recharge. (Time depends on model, settings, etc.)

May 31, 2013

Polio revisited: a review of Paralysed with Fear: the Story of Polio, Gareth Williams, Palgrave Macmillan in The Lancet.

Photo of wheelchairMay 20, 2013

A very nice power wheelchair available for best offer. My sister, Kathleen, used it for six months in a nursing home before she passed. It has an optional, removable vent tray, tilt in space option and joy stick. It comes with a battery and charger. My sister would be happy to know that someone was using it. Although it cost $13,598 new, you may have it for a donation to PHI. If anyone is interested or wishes to see it, call me at 616-304-3412. It is currently in storage at Marywood Dominican Sisters Motherhouse on Fulton St. in Grand Rapids, Michigan.

May 1, 2013

Medicare is expanding competitive bidding in July 2013. To find out what that might mean to you:  Beneficiary Introductory Brochure April 2013

April 2, 2013

Shingles Vaccine Survey: At the suggestion of a PHI Member, PHI’s Medical Advisory Committee is asking six questions about the shingles vaccine. If you are a polio survivor, please take this short survey. Click here for a printable copy to fill out and return by mail. Deadline is April 27th.

February 13, 2013

Shingles Vaccine Survey: At the suggestion of a PHI Member, PHI’s Medical Advisory Committee is asking six questions about the shingles vaccine. If you are a polio survivor, please take this short survey. Click here for a printable copy to fill out and return by mail. Deadline is April 27th.

January 30, 2013

PHI Members: Your copy of Post-Polio Health (Vol. 29, No. 1) is at the printer. Watch for your copy in your mailbox in mid-February.

Not a Member and want to receive PHI's 12-page quarterly newsletter? See or PHI's Membership Application.

January 14, 2013

Have you had your flu shot? It is not too late. Use the Flu Vaccine Finder and get vaccinated now. Is it a cold or the flu?

January 7, 2013

“The War Against Microbes,” is a 29-minute film for the Nobel Prize group. The film’s intro is an interview with polio survivor Francine Falk-Allen, and the war on the poliovirus is part of the story. It will be aired on some PBS stations. Check your local listings. It is also available on the Nobel site.

December 19, 2012

Members of PHI ...  

Thank you for your continued support of our educational, advocacy and networking activities, and for your support of the separate Research Fund. Remember that PHI creates and, too. End-of-the year donations are accepted online at or by mail.

PHI’s Board of Directors and Staff wish you and your loved ones a peaceful and happy holiday season.

December 13, 2012

Специальные приглашения. Этот веб-сайт, Polio Place (, написана в основном на английском, но может быть автоматически переведены на Google Translate.Информация на сайте является полиомиелита выживших, которые испытывают отдаленные последствия полиомиелита (старение, имеющий инвалидность) или после полиомиелита, синдрома и для их врачей и других медицинских работников, которые относятся к ним.

December 3, 2012

Una invitación especial. Este sitio web, Polio Place ( está escrito en su mayoría en Inglés, pero puede ser traducido automáticamente por Google Translate. La información contenida en este sitio es para los sobrevivientes de polio que están experimentando los efectos tardíos de la polio (envejecimiento con discapacidad) o el síndrome de post-polio y para sus médicos y otros profesionales sanitarios que los tratan.

November 13, 2012

Have you seen the movie advertisements for “The Sessions” starring John Hawkes, Helen Hunt and William H. Macy? Want to know more about the story that features a polio survivor? Check out “The Sessions” – Polio and Sex on the Big Silver Screen. Read more ...

November 6, 2012

دعوة خاصة. هو مكتوب هذا الموقع، Polio Place ( ، ومعظمها في اللغة الإنجليزية، ولكن يمكن أن تترجم تلقائيا باستخدام مترجم جوجل. المعلومات في الموقع هي للناجين من مرض شلل الأطفال الذين يعانون من آثار شلل الأطفال في وقت متأخر من (الشيخوخة ذوي الإعاقة) أو متلازمة ما بعد شلل الأطفال وللأطباء وغيرهم من المهنيين الصحيين الذين يعالجون منها.

October 18, 2012

Reminder to USA Medicare recipients:  October 15 to December 7 is when ALL people with Medicare can change their Medicare health plan and prescription drug coverage for 2013. Visit Medicare’s Open Enrollment Center

October 14, 2012

Have you looked at Polio Place lately? 
Check out all the recently added info under “What’s New.”

September 17, 2012

three women holding their lettersWE'RE STILL HERE! ... AND WE VOTE!
PHI’s sixth annual awareness and action week is October 7-13, 2012. Help distribute the non-partisan letter of concerns and let our political leaders know that WE’RE STILL HERE!  Print out the letter and mail it to President Obama, Candidate Mitt Romney, your current legislators, governors, etc. Let them know our concerns. Letter for distribution Oct. 3-5 (pdf) (Word)

Suggestions for distribution (pdf) (Word) contains links to addresses.  Join the campaign!

The Saint Louis Support Group holding their letters

September 17, 2012

WE'RE STILL HERE! October 7-13, 2012,!
PHI’s sixth annual awareness and action week is three weeks away. Help distribute the non-partisan letter of concerns and let our political leaders know that WE’RE STILL HERE!

Letter for distribution Oct. 3-5 (pdf) (Word)

Suggestions for distribution (pdf) (Word)

September 6, 2012

Reminder! Do you live near Winnipeg, Manitoba, Augusta, Maine, or New Philadelphia, Ohio? Check out the post-polio conferences being held in September.

August 27, 2012

Reminder! SEPTEMBER 17 (8:30am to 4:00pm)
Pain and Pain Management, Victoria Inn, Winnipeg, Manitoba, Canada.
Guest speakers: Carol Vandenakker, MD, University of California-Davis Medical Center, Sacramento, California, and a panel composed of Barbara Shay, PhD, University of Manitoba Physical Therapy Department, Cheryl Hnatiuk, OT and Jim Derksen. Contact Estelle at

August 14, 2012

Do you know someone in need of bracing or custom-made shoes? The Joyce and Arthur Siegfried Memorial Fund and the Gilbert Goldenhersh Memorial Tribute Fund (Missouri only), both coordinated by PHI, provides up to $500 to polio survivors who need assistance. Contact for an application.

August 6, 2012

Follow the progress of the US Senate ratification of the Convention on the Rights of People with Disabilities (CRPD).

July 27, 2012

The USICD reports that during the week of July 30th the Convention on the Rights of People with Disabilities (CRPD) will go to a full floor vote in the Senate because the US Senate Foreign Relations Committee voted 13-6 to do so on Thursday, July 26th. It is essential that every Senator hears the American disability community’s support behind this important treaty in order to achieve successful ratification! Call the Capitol Switchboard at 202-224-3121 or visit here in order to contact your two U.S. Senators.

July 23, 2012

The US Senate markup and vote on the Convention on the Rights of People with Disabilities (CRPD) has been rescheduled for the Anniversary of the Americans with Disabilities Act: Thursday, July 26 at 9:30 am in Dirksen G-50.

ACTION ALERT: United States International Council on Disability (USICD) need as many people to attend as possible – so get the word out! Follow one of the appropriate links below to sign on as either an individual or, if authorized, for your organization. See Update. And ...
Link to the Full Letter; Click here to sign on as an INDIVIDUAL; Click here to sign on your ORGANIZATION.

July 14, 2012

4th Congress of Poliomyelitis

Announcement from France: 
4th Congress of Poliomyelitis, Thursday, 4 April 2013, at the Residence International Paris 20. Jan Lexell, MD, PhD, Skåne University Hospital, Malmö, Sweden, Professor, Medical Director, Department of Rehabilitation Medicine, will speak.

July 2, 2012

The End of PolioCheck out The End of Polio, a grassroots campaign coordinated by the Global Poverty Project, in support of global polio eradication efforts led by the Global Polio Eradication Initiative, Rotary International, UNICEF, the World Health Organisation and the Gates Foundation.

June 25, 2012

PHI’s Review Panel of its Research Fund is reviewing five grant proposals submitted to PHI/IVUN for a $25,000 award to be given in 2013.

June 12, 2012

Do you have bracing in your closet that is unused? Check out PIPO Missions Inc and consider donating to this group. They “ break down”  all donated braces “into components  as reusable parts or newly made” bracing for the people they serve (mainly  in the Yucatan and Chiapas Regions of Mexico.)

June 5, 2012

Announcing: 29th Pacific Rim International Forum on the Rights of Persons with Disabilities, April 27th and April 28th, 2013, Hilton Hawaiian Village, Honolulu. Hawaii, Call For Proposals – Opens August 1, 2012. (;

May 29, 2012

The Greater St. Louis Post-Polio Support Group will meet June 16th at St. Luke's Hospital in Conference Room #1. The program, “Ortho-Bionomy®: Is it for Polio Survivors (You)?” will start promptly at 10:00 am and end at noon. Special speaker will be Karen Broyles, Dipl. ABT (NCCAOM). Survivors on the email list in the Missouri and Illinois should watch their email box for details.

May 13, 2012

PHI announces

WE'RE STILL HERE! October 7-13, 2012,

(Click to see how you can help with the 2012 campaign.)

April 27, 2012

Post-Polio Health (Vol. 28, No. 2), PHI’s quarterly newsletter (print), was mailed to Members this week. Not a Member? Join online.

April 6, 2012

Live in the Cleveland area? Dr. Peter Salk will present "Jonas Salk’s Legacy: Immunization, Institution, Inspiration" at the Cleveland Medical Library Association annual meeting on April 27th. See flyer for details.

April 2, 2012

Polio Survivors in the St. Louis area:  Join us on Saturday, April 21 at 11:00 am-1:00 pm in the first-floor conference room of the American Cancer Society building, the home of the PHI office. (4207 Lindell Blvd is between Sarah and Boyle and two blocks east of the Basilica-St. Louis.)

Let’s use the time to get to know each other and “just talk.” Do you have a favorite device or gadget that makes your life easier? If so bring it along, so we can photograph it and you for PHI’s Polio Place.

Bring a box lunch and join the conversation! Please RSVP and we will give you parking tips.

March 23, 2012

Reminder of Deadline:  May 4, 2012 is the date Phase I applications are due for PHI’s Research Grant of $25,000 for work done in 2013. Click for more information.

March 6, 2012

Full-time and Part-time Users of Home Mechanical Ventilation: Your experiences and opinions wanted! (Polio survivors who use a bi-level positive pressure airway ventilator at night only are asked to complete the survey, too.) The survey asks about your experiences while flying and is available in EnglishDutch, French and Spanish.

Surveys received by March 5 have been included on a poster to be presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain.

IVUN will accept surveys until June 1, 2012 for its final report.

February 27, 2012

Full-time and Part-time Users of Home Mechanical Ventilation: Your experiences and opinions wanted! (Polio survivors who use a bi-level positive pressure airway ventilator at night only are asked to complete the survey, too.) The survey asks about your experiences while flying and is available in EnglishDutchFrench and Spanish. MORE ...

*Surveys received by this date will be included on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain. IVUN will accept surveys until June 1, 2012 for its final report.

February 9, 2012

Welcome readers of Dr. Donohue. You are invited to look around our extensive website.

Looking for general information? See Remember Polio.  What is Post-Polio Syndrome?

Looking for help to live with the late effects of polio? 
See Past Issues of Post-Polio Health©.

Looking for local resources? See Post-Polio Directory.

Are you a family member or friend?  See Post-Polio Health Care Considerations for Families & Friends.

February 6, 2012

Full-time and Part-time Users of Home Mechanical Ventilation: Your experiences and opinions wanted!  The survey is available in English, Dutch, French and Spanish. The focus of this survey is flying as a ventilator user and we ask you to complete it even if you think you will never fly. There are questions for you. Parents are invited to share their experiences when traveling with their child. Please pass this message on to other vent users. Thank you!

What will we do with this information? IVUN is surveying the manufacturers of portable/home use ventilators and numerous airlines, too. IVUN will post a report and a summary of its findings on and on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress to be held March 15-17, 2012 in Barcelona, Spain.

Surveys received by March 5th will be included on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain. IVUN will accept surveys until June 1, 2012 for its final report.

January 31, 2012

US Transportation Security Administration (TSA) announces launch of TSA Cares Toll Free Helpline (1-855-787-2227) for travelers with disabilities and medical needs.

January 17, 2012

PHI Issues “Call for Proposals.” We are looking for new and creative research projects. Click for more information. First deadline is May 4, 2012.

January 4, 2012

As we start 2012, PHI thanks its Members for their generous support, which makes it possible for us to make information available to all through this website. You, too, can help polio survivors worldwide by becoming a Member or by donating online.  

December 12-21, 2011

Happy Holidays!

Post-Polio Health International (PHI) has made a huge impact on the lives of polio survivors worldwide over its 50-year history. Providing information may be our most important function.

We are here. We listen. We react. We find answers. We share. 

You can help support our mission by becoming a Member of PHI (or by sending an end-of-the-year donation) on our secure site today.

The PHI office will be closed December 23, December 26-28 and Jan 2, 2012.

December 7, 2011

The Breathing and Sleep Symposium, held on Saturday, October 29, 2011 at the Salk Institute for Biological Studies in La Jolla, California, was videotaped. They can be viewed at

click image for more infoNovember 21, 2011



The Post-Polio Directory has been updated and uploaded. 

If you prefer a print copy, one can be purchased online at

November 2, 2011

Medicare Part B premiums for 2012 lower than projected. The U.S. Department of Health and Human Services (HHS) announced that Medicare Part B premiums in 2012 will be lower than previously projected and the Part B deductible will decrease by $22.

Reminder:  Medicare Open Enrollment 2011 is earlier this year: October 15–December 7, 2011.

October 25, 2011

Lives Worth Living premieres on PBS Series Independent Lens on Thursday, October 27th. Check your local listings. Lives Worth Living traces the development of the disability rights movement. Familiar names include Judith Heumann and Ed Roberts and more.

October 17, 2011

PHI Members: Post-Polio Health (Vol. 27, No. 4), the quarterly newsletter of Post-Polio Health International, is at the printer. You will receive your copy in early November. In addition to our regular columnists, the issue features “Pressure Sores Are Painful, but Preventable”  and a look back at the organization’s first post-polio conference 30 years ago.

WE'RE STILL HERE! October 9-15,2011October 10, 2011

October 9-15 is WE'RE STILL HERE! week.

This year’s focus is to encourage places of worship to make their buildings and programs more accessible.

See more ...

WE'RE STILL HERE! October 9-15,2011October 4, 2011

Our designated week is October 9-15, just a week away.

This year’s focus is to encourage places of worship to make their buildings and programs more accessible.

See more ...

September 20, 2011

The Informed Scientist logo

Webcasts of selected sessions from the Aug 31Sept 2, 2011 Post-Polio Syndrome – a challenge for today are available.

More from the European conference on polio: Photos, PowerPoints, Abstracts and Posters are all posted at

September 7, 2011

Thanks to PHI Members for suggesting these makers of Hoke corsets:
Hastings Professional Medical Equipment, Cleveland, Ohio (216-898-3300), Freeman Manufacturing Company, Sturgis, Michigan (800-253-2091), Snell’s Orthotics & Prosthetics, Memphis, Tennessee (901-725-7048), and Shirlene Horton at C.H. Martin Company, Orthotics/Prosthetics, 329 Marietta St NW, Atlanta, Georgia 30313 (404-525-1533). If you live in the Bay Area (California) and can pay out of pocket, contact, Barbara Becchio (; phone – 510-734-0434). She is a costume maker who teaches theatrical costuming and who sews for the San Francisco opera.

August 22, 2011

photo of location of Europe Conference on PolioVisit PHI’s exhibit booth at the August 31–September 2 in Copenhagen for the European conference on polio.

August 15, 2011

National Rally in Washington DC, on Wednesday, September 21, 2011. Join ADAPT and other disability, aging and civil rights groups as we demand responsible Medicaid reform that supports our civil right to live in the most integrated setting.

August 8, 2011

Foundation Exploration Innovation

The 28th Annual Pacific Rim International Conference on Disability & Diversity – “Living to Our Complete Potential” – is scheduled for March 26 & 27, 2012. For details go to The 2012 Call for Proposals opens Aug 15.

August 1, 2011

Facebook logoLike us on Facebook.
Post-Polio Health International (PHI)

July 27, 2011

Facebook logoLike us on Facebook.

Post-Polio Health International (PHI)

International Ventilator Users Network (IVUN)

Enjoy the photographs!

WE'RE STILL HERE! October 9-15,2011July 11, 2011

PHI added information about accessibility of masjids to its  Links to Faith Groups Disability/Accessibility Information. The info is provided by the EquallyAble Foundation.


July 5, 2011

“Aging Wisely with PPS” will be held at the Genesys Conference & Banquet Center, Grand Blanc, Michigan, on August 20, 2011. Contact Michigan Polio Network, Inc.

June 27, 2011

cover of this issue of Post-Polio Health


Selected articles from
Post-Polio Health (Vol. 27, No. 2)

have been uploaded. 




June 21, 2011

Photo of person in kayak on lakeThe next Post-Polio Wellness Retreat  at Bay Cliff Health Camp, Big Bay, Michigan, is scheduled for September 12-17, 2011. The cost to attend is $275 per person, and includes the full program, comfortable housing accommodations and home-cooked meals. Attending a wellness retreat can be life changing! Special sessions on how to plan a wellness retreat will be presented by the experienced staff at no extra charge. Come and learn how to offer the opportunity in your area. Applications are available here

June 13, 2011

Consumer Health Information from the Food & Drug Administration:  
Limit Use of 80 mg Simvastatin

May 31, 2011

Living Longer Living BetterVisit the PHI and IVUN booth number 415
June 6
& 7th at the Festival of International Conferences on Caregiving,
Disability, Aging and Technology – FICCDAT 2011.

May 23, 2011

Reminder:  Post-Polio Syndrome – a challenge of today will be held August 31 – September 2 at the Hotel Crowne Plaza Copenhagen Towers, Copenhagen, Denmark. Details, including a preliminary program, are posted at

May 17, 2011

WE'RE STILL HERE! October 9-15,2011WE'RE STILL HERE! 2011 Focus:

Plan now for 2011 activities! 

Links to Faith Groups Disability/Accessibility Information

May 9, 2011

Learn about organizing a wellness retreat in your locale.

Bay Cliff Health Camp, very experienced in planning and executing Post-Polio Wellness Retreats, will offer a free pre-retreat and post-retreat in-service September 12-17, 2011 for support group leaders who are interested in planning a retreat "back home.”  Applications and the brochure are available now.

April 19, 2011

Looking for information because a family member or friend had polio?  Check out PHI’s latest information created just for you.  Click for Post-Polio Health Care Considerations for Families and Friends Flowchart

April 11, 2011

Looking for a conference to learn about post-polio problems and solutions? 
Check PHI’s Post-Polio Community Calendar. 
Submit information about your upcoming event! Send the name of the event, place and date, sponsor and contact information, plus a few descriptive details to

click image for more infoMarch 28, 2011


Click image for more info ...





March 21, 2011

Two new informative websites and one survey:

FIA Foundation for the Automobile and Society Guide for the disabled traveller at

What the Affordable Care Act Means for You at

The Federal Communications Commission (FCC) has launched an online national survey (also in Spanish) of individuals with disabilities to determine the most effective and efficient technologies and ways to access emergency services.

March 14, 2011

Polio Survivors and Families of Greater St. Louis:
Join us Saturday, April 9, 2011 at United Access,

9399 Natural Bridge Rd., St. Louis, for a gathering of polio survivors and a tour of United Access's products and facility.

10:00-10:30 am Mingling and Refreshments.
RSVP to Mary Sauer (;
10:30-11:00 am Welcome and Tour by Rich Venhaus, General Manager of United Access;
11:00-11:45 am Welcome and discussion of "What's Next."
Joan L. Headley, Post-Polio Health International.

image of Polio Place websiteWelcome to Polio Place! Explore and contribute to its content by using "Contact" or "Submit your Artifact."

The site also contains all the "Gazettes" edited by our founder, Gini Laurie. It is not all "history." Check out "Living with Polio."

PHI adds new content daily. Visit often!


image of Polio Place websiteFebruary 7, 2011

PHI adds new website – Polio Place – to its online resources.

Explore Polio Place and contribute to its content by using "Contact" or "Submit your Artifact." The site also contains all the "Gazettes" edited by our founder, Gini Laurie. It is not all "history." Check out "Living with Polio."

January 24, 2011

Help us update Post-Polio Directory. Are you listed (post-polio clinic, health professional, support group/resource person) in Post-Polio Directory which is downloaded 1,200 times per month? Is your information correct? Send changes or additions to

January 17, 2011

Judith E. Heumann was named New Mobility's "Person of the Year."

Check out the excellent article about Judy and her work.

Post-Polio Syndrome: A Challenge of TodayJanuary 10, 2011

Registration is now open for Post-Polio Syndrome – A Challenge of Today, an international polio conference in Copenhagen August 31st to September 2nd, 2011.

Check out the preliminary program and more details on

January 3, 2011

Max Starkloff, friend of PHI and its founder, Gini Laurie, will be remembered Tuesday, January 4, 2011.


December 20, 2010

Best Wishes for the Holiday Season from PHI's Board and Staff.

PHI's website is supported by its Membership. Become a Member or Donate Now.
Download a Membership/Order Form (pdf) or download a Donation Form (pdf) to print and mail to PHI, call 314-534-0475, or use PayPal to

December 13, 2010

From the 2010 American Academy of Physical Medicine and Rehabilitation meeting:

December 6, 2010

FYI: Deadline for submissions for the FICCDAT Conferences (June 5-8, 2011) has been extended to January 4th 2011. FICCDAT will be held at the Sheraton Centre Toronto Hotel, Toronto, Ontario.

November 29, 2010

Reminder: Medicare Open Enrollment from November 15, 2010 – December 31, 2010. Check out the Official US Government Site for Medicare.

November 21, 2010

PHI's compilation of articles distributed at the November 21, 2010 meeting at the Salk Institute are available: Breathing Problems in Post-Polio. Read about the 2009 Breathing and Sleep Symposium (Ventilator-Assisted Living, Vol. 23, No. 4).


November 16, 2010

Source: Global Polio Eradication

Republic of Congo is experiencing an explosive outbreak of polio: although official data had not arrived in WHO HQ as of writing, at least 201 cases of acute flaccid paralysis and 104 deaths have been reported. Laboratory testing confirms that at least five of the AFP cases are caused by wild poliovirus (WPV1) and genetic sequencing shows that the virus is related to that circulating in Angola. Due to the large number of adult victims, all ages are being vaccinated.

Note: The number of cases globally is 767, half the number at this time last year (1337); largely due to progress in Nigeria (97% reduction) and India (93% reduction).

Sunrise at Bay Cliff Health CampNovember 8, 2010

September 2010 Success in
the Great North Woods

In mid-September, polio survivors not only from the Midwest, but also from the state of Nevada and the country of Greece, made their way to the shores of Lake Superior hoping to renew their mind, body and spirit.

Read more ...

November 2, 2010

Did you or your group celebrate WE'RE STILL HERE! week?

Send the details about or a link to your activities for "Reports from 2010 WE'RE STILL HERE!"

October 21, 2010

The Amigo Mobility International logo

Post-Polio Health International welcomes new supporter ...

Amigo Mobility International, Inc. manufactures a complete line of innovative mobility products including power operated vehicles/scooters, trunk and van lifts, and electric shopping carts. Designed to bring comfort, freedom and satisfaction to customers, Amigo's quality, made in the USA products have been Improving Lives Through Mobility® since 1968.

Click on logo for details.

September 13, 2010 thru October 10, 2010

October 10-16, 2010 is coming fast! PHI encourages you to speak to Rotary Clubs to thank them for their eradication efforts, to remind them of the contributions of people with disabilities and to remind them of the needs of younger polio survivors in the developing world and of aging survivors worldwide. Click on logo for details.

Mary Ellen Stan with Chino Rotary bannerMary Ellen Stan of the San Gabriel/Pomona Valley Polio Support Group visits Chino Rotary. "I was surprised to learn that my appearance at their meeting was the first time they had ever had anyone with PPS speak. A former District Governor, who has been to India twice (and is going again shortly) was in attendance. He agreed to speak at our January support group meeting to inform the members directly about what Rotary can do for polio survivors."



October 5, 2010

Children’s National (Washington, DC) is searching for former patients to help celebrate its 140th Anniversary Celebration in November 2010. Were you a patient? Click for details.

September 7, 2010

Live in the Bradenton, Florida area?
Polio Survivors Moving Forward: Aging with a Disability
You and your family are invited to an informational meeting on Tuesday, October 12, 2010 at 1:30 pm. The meeting will be held at Freedom Village Inn & Health Center, 6410 21st Ave., West Bradenton, Florida 34209. Parking places will be reserved. For more information, contact: Michelle Guevin, PT, or Marge Torre at 941-756-3883 or

August 30, 2010

November 21, 2010 (Sunday 9:00 am-2:30 pm). Breathing & Sleep, Salk Institute for Biological Studies, La Jolla, California (Directions). Download the Breathing & Sleep Symposium brochure. Contact: Gladys Swensrud ( or Salk Institute for Biological Studies (858-453-4100).

August 23, 2010

The Brazilian Post-Polio Association (Associação Brasileira de PósPoliomielite and SPP Syndrome, Syndrome PósPoliomielite) has contributed two chapters to “History of Poliomyelitis (A História da Poliomielite)” a book to be released on opening day of the Fourth History of Disease Seminar (IV SEMINÁRIO HISTÓRIA DAS DOENÇAS), September 1, 2010 at 5 pm in the Auditorium of the Museum of Life, Campus Fiocruz, Rio de Janeiro. An exhibition, "A World Without Polio,” will be on display from September 1-3, 2010. For details, contact

August 16, 2010

Paul K. Longmore, a leading disability scholar, died August 9, 2010. Longmore was a polio survivor and a user of home mechanical ventilation. Many tributes, in addition to this LA Times obituary, have been written.

Check out:

August 10, 2010

Reminder: AUGUST 31 – SEPTEMBER 2, 2011. Post-Polio Syndrome – a challenge of today. Hotel Crowne Plaza Copenhagen Towers, Copenhagen, Denmark. Hosted by P T U (The Danish Society of Polio and Accident Victims) and European Polio Union.

August 2, 2010

AUGUST 7 from 9:00 am to 4:00 pm, “Learning and Sharing Polio’s Legacy,” Delos V. Smith Senior Center – 101 West 1st Ave, Hutchinson, Kansas. Contact Central Kansas Polio Survivors, Jean Graber at Presenters include: Timothy A. Crater, MD, FACP; John G. Fan, MD; Joan Headley, PHI; and David P. Calvert, Attorney at Law.

We're Still Here! October 10-16, 2010July 27, 2010

WERE STILL HERE! October 10-16, 2010. 

Visit a Rotary Club luncheon meeting telling them 

Suggestions and ideas available. Read more ...


Cover and inside of MHS brochure


July 19, 2010

July 26, 2010 is the 20th Anniversary of the signing of the Americans with Disabilities Act (ADA). Join the nationwide celebration! Check American Association of People with Disabilities for history of the ADA, location of events and other ADA resources. Connect with disability groups in your state. The Missouri History Museum ( St. Louis ) created a special exhibit The Americans with Disabilities Act: Twenty Years Later that will be open from June 26, 2010 to June 6, 2011.  Check out the related website – PHI’s founder Gini Laurie is featured in the “Independent Living Movement” section. The site and the exhibit include photos from the PHI archives.

July 12, 2010

Photo of Judith Heumann, Annie Barber, Linda Bieniek and Joan Headley at PHI's 10th International Conference

Judith Heumann (left), Annie Barber, Linda Bieniek, Joan Headley at PHI’s 10th International Conference (2009) in Warm Springs, Georgia.

Former PHI Board Member Judith Heumann has been appointed the Special Advisor for International Disability Rights and will lead the Administration’s efforts to develop a comprehensive strategy to promote the rights of persons with disabilities internationally; coordinate an interagency process for the ratification of the Convention on the Rights of Persons with Disabilities; ensure that foreign assistance incorporates persons with disabilities; lead on disability human rights issues; ensure that the needs of persons with disabilities are addressed in international situations; and conduct public diplomacy, including with civil society, on disability issues.

July 2, 2010

Meeting in Mexico City: July 28 from 8:00 am to 19:00 pm, Mexico Second National Post-Polio Syndrome Symposium, Auditorio de la Academia Nacional de Medicina, Cuauhtémoc Av.330, Bloque B de la Unidad de Congresos “Centro Medico Siglo XXI,” Mexico City. For medical specialists and post-polio survivors. For additional information and free reservation, contact  (5255) 5574 2926 or

Survey for Spanish speaking survivors: Please contact the post-polio group (list below) closest to you to read about the survey, to understand what will be done with the results and to obtain a password to access the survey. To read about the survey (in Spanish), visit

June 10, 2010

PHI Research Fund recipient Antonio Toniolo, MD, PhD, Professor of Medical Microbiology and Virology, presented a poster at a meeting of the American Society of Microbiology in May 2010.

June 3, 2010

Two new articles from IVUN:  International Ventilator Users Network (IVUN) releases “Breathing and Sleep Problems in Polio Survivors” and “Tests for Breathing Problems If You Have a Neuromuscular Condition.” Be sure to review these articles, particularly if your healthcare professionals only mention obstructive sleep apnea and CPAP. They might be right, but they might not be right. You may be underventilated and in need of a different breathing device. The second article, “Tests for Breathing Problems…,” describes a routine evaluation for respiratory function which is good for the first evaluation and for later periodic checkups.

May 24, 2010

The first announcement has been made for the 2011 Post-Polio Syndrome – a challenge of today, a conference to be held in Copenhagen, Denmark, August 31-September 2.

May 18, 2010

For the latest on the polio eradication effort, visit Global Polio Eradication Initiative. 

May 3, 2010

JUNE 10, 2010 – Post-Polio Health and Wellness Conference with keynote speaker Frederick M. Maynard, MD, Marquette, Michigan. Clarion Resort Pinewood Park, North Bay, Ontario, Canada. For details, contact Polio Canada (; 800-263-3463, Ext 7207). RSVP by May 10th.

April 25, 2010

Join us in Toronto: On May 1 the Toronto-Peel Post-Polio Support Groups celebrates its 25th Anniversary at the Radisson Hotel Toronto East, Toronto. For details, contact or Speakers include Anthony DiPasquale, RNCP-OHP; Joan L. Headley, MS; Audrey King, MA (Founder of the group); and Angela King, RRT.

April 11, 2010

“The Shot Felt ’Round the World” will premiere Wednesday, April 14, at a private screening at the Twentieth Century Club, just blocks from where the vaccine was developed. The film, which was supported by a grant from the University of Pittsburgh, is comprised of interviews with those who were involved in the valiant campaign to end polio, including Dr. Sidney Busis, who performed tracheotomies on young iron lung patients on the polio ward of Municipal Hospital, while three floors below, lab technicians were pipetting the live polio virus by mouth.

“Sex & Drugs & Rock & Roll” is a biopic about English rock star Ian Dury, who overcame childhood polio to become a legendary figure in Rock and Roll. The film is premiering at the Tribeca Film Festival in New York and will then be released theatrically, on Video-On-Demand and on DVD starting April 21st on our new distribution platform Tribeca Film.

April 5, 2010

World Health Day, April 7, 2010

For the first time in history, more than 50% of the world’s population lives in an urban area. This year’s focus is Urbanization and health.

The Theme is 1000 cities 1000 lives

March 25, 2010

NEW IN 2010 ...
PHI will send an electronic PHI Membership Memo at the end of each month it does not mail the print Post-Polio Health.
Watch for your March PHI Membership Memo. Not a Member?

March 9 & 15, 2010

DEADLINE EXTENDED : Post-Polio Health International’s deadline for Phase 1 of proposals for the 2011 $25,000 research award has been extended to March 31, 2010. Details are available at If you have questions, call Joan L. Headley at 314-534-0475 or email

February 15, 2010

REMINDER: Post-Polio Health International’s deadline for Phase 1 of proposals for the 2011 $25,000 research award is Friday, March 5, 2010. Details are available at If you have questions, call Joan L. Headley at 314-534-0475 or email

February 8, 2010

Polio survivor, freelance writer and contributor to Post-Polio Health, Reji Mathew, PhD, New York University, Counseling and Behavioral Health Division, has a new website. The main focus is to raise awareness among media, health care providers, and the public regarding the long-term health care needs of persons living with paralysis.

January 31, 2010

REMINDER: Post-Polio Health International’s deadline for Phase 1 of proposals for the 2011 $25,000 research award is Friday, March 5, 2010. Details are available at If you have questions, call Joan L. Headley at 314-534-0475 or email

January 24, 2010

Festival of International Conferences on Caregiving, Disability, Aging and Technology – FICCDAT 2011 will be held June 5-8, 2011 in Toronto, Canada. FICCDAT 2011 will bring together six important and different conferences all focused on enhancing the lives of seniors, persons with disabilities and their family caregivers. The conferences in the festival are Growing Older With A Disability; RESNA/ICTA (Rehabilitation Engineering and Assistive Technology Society of North America); Advances in Neurorehabilitation; Caregiving in the 21st Century; 34th Canadian Medical and Biological Engineering Conference; and International Conference on Best Practices in Universal Design.

All six conferences are now accepting abstracts, which are due December 1, 2010. To learn more about the Festival and the opportunities to present, go to Online registration is also available. Early bird registration closes April 1, 2011. When you visit the site, it will ask you to sign up and you will then receive future updates.

January 19, 2010

Polio Survivors: Do you use voice-recognition software? Have you tried several programs? Which do think is the best and why? Send your ideas to

January 11, 2010

Changes in the US Medicare law take effect this month and will allow some Americans who are struggling to pay their prescription drug costs to get extra help. The new Medicare law eases prior requirements in two ways. First, it eliminates the cash value of life insurance from counting as a resource. Second, it eliminates the assistance people receive from others to pay for household expenses, such as food, rent, mortgage or utilities, from counting as income. Also, the application for extra help can now start the application process for Medicare Savings Programs – state programs that provide help with other Medicare costs. These programs help pay Medicare Part B (medical insurance) premiums. For some people, the Medicare Savings Programs also pay Medicare Part A (hospital insurance) premiums, if any, and Part A and B deductibles and co-payments. To learn more about the extra help program go to

January 5, 2010

Happy 2010! Check out this timely (for many of us) article from the
Harvard Health Letter … Out in the cold.

December 23, 2009

Season’s Greetings from the PHI Board and Staff.
The office will be closed from December 24, 2009 – January 4, 2010.

December 15, 2009

Polio Survivors and Pop Music
As part of his research into disability and pop, Prof. George McKay (Greater Manchester, UK), has published an academic article on polio survivors and popular music entitled: “Crippled with nerves: Popular music and polio.” It appears in the Cambridge University Press journal, Popular Music, Volume 28, Issue 03, pp. 341-365.

December 4 & 13, 2009

PLVs Discontinued as of 12/31/2009.
Service, etc. expected until 12/31/2014. In late November, Philips Respironics sent a letter announcing the discontinuation of the PLV-100, PLV-102b and PLV-102. If you use one of these products, check out the letter for details. The company is suggesting the Trilogy100 as the replacement product.

November 22 & 30, 2009

Info for Medicare recipients: November 15 Starts Limited Period to Review And Change Plans. Check out this message from the Medicare Rights Center, a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives.

Check out the US Department of Health and Human Services Centers for Medicare & Medicaid Services Open Enrollment Center.

Remember to utilize the services of your State Health Insurance Information Programs (SHIIP or SHIP).

November 15, 2009

The videos from the Breathing & Sleep Symposium at the Salk Institute held on November 1 are available on line at:

November 10, 2009

Now on YouTube

Post-Polio Wellness Retreat videos by videographer Barry Burman, National Center on Physical Activity and Disability (NCPAD), Chicago, Illinois, are now on YouTube. Once you get to the NCPAD site, you will see “Uploads” in the right hand box. Click on “See all.” Then type in “polio” in the search box. Click on the video of your choice: Post-Polio Wellness Retreat-Part 1; Post-Polio Wellness Retreat- Part 2; Bowling at the Post-Polio Wellness Retreat; Cycling at the Post-Polio Wellness Retreat; Kayaking at the Post-Polio Wellness Retreat; Adaptive Cardio at the Post-Polio Wellness Retreat; Seated Exercises at the Post-Polio Wellness Retreat; Participant Feedback at the 2009 Post-Polio Wellness Retreat.

November 1, 2009

New from the Department of Transportation - Revised for 2009:  New Horizons: Information for the Air Traveler with a Disability.

October 25, 2009

From Els Symons:
Radio Netherlands Worldwide made a video message about post-polio syndrome with Prof. Dr. Frans Nollet and his department in the Amsterdam Medical Hospital (Netherlands).
It has English subtitles and you can view it on YouTube.

October 18 & 25, 2009

PHI announces Call for Proposals for Sixth Research Award.

Logo for WE'RE STILL HERE! October 11-17, 2009


Check out 2009 Activities.



October 11, 2009

Take part in WE'RE STILL HERE! PHI challenges survivors to remedy one accessibility barrier in their community and make the world a better place for all.
Click on logo for updates.

What does WE ’RE STILL HERE! mean? Columnist Nancy Baldwin Carter explains.

Bumper Sticker for WE'RE STILL HERE!Want a sticker for your vehicles ... car, truck, wheelchair, scooter?

PHI has a quantity of 4” by 4” bumper stickers available for a donation to Post-Polio Health International. Recommended donation: 1-10 ($1.00 each); 11-50 ($.70 each); 51-100 ($.60 each). Send your request and payment to PHI, 4207 Lindell Blvd., #110, St. Louis, MO, 63108-2930. Obtain a sticker and start a conversation!

October 4 & 11, 2009

On September 30, 2009, the National Council on Disability (NCD) released a report entitled The Current State of Health Care for People with Disabilities calling for immediate health care reform for people with disabilities. DREDF led the team that researched and wrote this landmark report.

Saudi Arabia has announced that everyone arriving for the annual pilgrimage to Mecca in November will have to swallow a dose of oral polio vaccine under the eyes of health officials.

September 27, 2009

Bumper Sticker for WE'RE STILL HERE!Plan now for October 11-17, 2009.
Click on logo for updates.

Want a sticker for your vehicles-car, truck, wheelchair, scooter?
PHI has a quantity of 4” by 4” bumper stickers available for a donation to Post-Polio Health International. Recommended donation: 1-10 ($1.00 each); 11-50 ($.70 each); 51-100 ($.60 each). Send your request and payment to PHI, 4207 Lindell Blvd., #110, St. Louis, MO, 63108-2930.
Obtain a sticker and start a conversation!

What does WE ’RE STILL HERE! mean? Columnist Nancy Baldwin Carter explains.

image of brochure cover for breathing & sleep


September 13 & 22, 2009

Concerned about sleep and breathing? Use a ventilator? Make plans to attend "Breathing and Sleep: Solutions for People with Neuromuscular Disorders" to be held November 1, 2009 (Noon–5:00 pm) at the Salk Institute, La Jolla, California.

Registration (available online) is requested for the complimentary half-day program designed for individuals with a neuromuscular condition and their families.

September 7, 2009 screen shot of media dis & dat


Media dis&dat is a database of news and information about people with disabilities and disability issues maintained by B.A. Haller. The goal is “to use this blog to create a database of media stories on disability topics from around the world.” Bookmark it and check it often.


August 30, 2009

Bay Cliff Health Camp's 4th annual Post-Polio Wellness Retreat

Applications are now available for Bay Cliff Health Camp's 4th annual Post-Polio Wellness Retreat. The retreat, with Dr. Fred Maynard as medical director, will take place September 14 -19, 2009 in Big Bay, Michigan. Anyone interested in more information should contact Christy Osborn at 906-345-9314 or visit Note that survivors from anywhere may apply. Spouses, attendants and support persons are also invited.

August 23, 2009

Want to help end polio? International governmental groups (WHO, UNICEF) are focused on eradicating polio and so is the NGO Rotary International. Here are a few trustworthy sites:

End Polio Now

Polio Survivors and Associates

Rotary International- End Polio Now

August 16, 2009

INFORMATION FOR PEOPLE WITH DISABILITIES ABOUT H1N1 VIRUS from long-time disability activist and educator Lex Frieden ( with contributions by Kim Dunn, MD, and Gerard Francisco, MD (The University of Texas Health Science Center at Houston, USA).

August 9, 2009

Check out the new website of Reji Mathew, PhD, advocate and psychotherapist and clinical instructor at New York University . A freelance writer, Mathew focuses on Health Care Advocacy, Coping Skills Education, Promoting Medical Rehabilitation for Chronic Conditions, and The Role of the Arts in Fostering Emotional Resilience.

August 2, 2009

Have you expressed your opinion about healthcare reform?
Link here to connect with your legislators.

Reminder: CD ROM of Program Booklets Now Available
Daily program booklets (Thursday–60 pgs; Friday–98 pgs; Saturday–70 pgs) from PHI’s “10th International Conference: Living with Polio in the 21st Century” are now available. In PDF format on a single CD, the files contain abstracts and handouts.

Here is a sample of what is on the CD.
From Thursday: Polio – The Legacy of Warm Springs
From Friday: Benefits and Techniques of Aquatic Therapy
From Saturday: Bladder Inconveniences

Order form & domestic pricing information. Print and mail.
Order form & international pricing information. Print and mail.

July 26, 2009 is now Check out “Proclamation by the President on the Anniversary of the Americans with Disabilities Act,” which includes the US commitment to sign the United Nations Convention on the Rights of Persons with Disabilities, adopted by the United Nations General Assembly in New York on December 13, 2006. The actual signing of the treaty will take place at the UN headquarters on July 30, 2009 in New York City by Susan Rice, the United States Ambassador to the UN.

July 19, 2009

Influenza A(H1N1): "Current Situation" to "Advice for Individuals" from the Pan American Health Association.

July 12, 2009

cover of Disabiled Village ChildrenHesperian announces that the new, updated edition of their benchmark book on community-based rehabilitation, Disabled Village Children, is available for free download. From making playgrounds more accessible to creating low-cost rehabilitation aids, Disabled Village Children contains so much information, plus over 4000 helpful drawings and photographs to help readers of all levels understand it. Full of practical information, this indispensable book shows how to identify primary and secondary disabilities, the best range-of-motion exercises, how to build 6 different kinds of wheelchairs using local resources, fun and education toys that children with disabilities can make and use, and more.

June 29, 2009 & July 5, 2009

Invitation to participate in Aging with a Physical Disability Survey Study is from the Aging Rehabilitation Research and Training Center, Department of Rehabilitation Medicine at the University of Washington.

June 20, 2009

Happy Father’s Day!
Info from National Women’s Health Resource Center for fathers and dads.

In case you missed the feature on Lauro S. Halstead, MD …
Polio Pioneer Helps Survivors Hold on to Strength: NPR

June 14, 2009

Post-Polio WaterWork by instructors Mary Essert BA, Vickie Ramsey RN, Karen Wilson MSE is the first in a series of training courses available for download to a variety of devices. For details, see The fee is $35. CEUs are offered.

May 31, 2009 and June 7, 2009

CD of Program Booklets Now Available

Daily program booklets (Thursday–60 pgs; Friday–98 pgs; Saturday–70 pgs) from PHI’s 10th International Conference: Living with Polio in the 21st Century are now available. In PDF format on a single CD, the files contain abstracts and handouts.

Order form & domestic pricing information. Print and mail.

Order form & international pricing information. Print and mail.

May 24, 2009

Memorial Day in the US marks the beginning of summer activities. See and Be Safe offers a variety of reflective strips and other products to help keep you safe.

May 17, 2009

From Dr. Frans Nollet, Academic Medical Center, University of Amsterdam, Netherlands

Radio Netherlands Worldwide recorded two video messages of polio survivors living in the Netherlands – one Dutch and one African – to comment on what it is to live with polio residuals and what they think of the recent acute polio outbreaks. SEE THE VIDEOS ... 


Opportunity to be involved in research:

Are you a cancer survivor who had limitations in activities of daily living prior to your cancer?

May 10, 2009

logo for PHI's 10th International Conference, Living with Polio in the 21st Century, April 23-25, 2009

Photo of conference registrants walking past photo of Elvis Presley receiving a polio vaccine shot.

"The Spirit of Warm Springs" was evident as the staff at Roosevelt Warm Springs Institute for Rehabilitation (RWSIR) in Warm Springs, Georgia, welcomed 436 registrants during the three-day meeting. In attendance were survivors, family members and health professionals from 11 countries (46 individuals) and 39 states and the District of Columbia.


May 3, 2009

Thank you

... for attending our 10th international conference: Living with Polio in the 21st Century. PHI will send a list of participants and evaluation forms in the near future. PHI will collect the handouts that were not in the program booklets and make them available to attendees. The PowerPoint presentations are the intellectual property of the presenters.

... for presenting at Living with Polio in the 21st Century. The Board and Staff of PHI received many, many compliments about the quality of the content of the sessions and the interaction among the participants and presenters. The ripple effect will be substantial; lives will be changed.

A special thank you

... to the Staff at Roosevelt Warm Springs Institute for Rehabilitation, led by Greg Schmieg, Executive Director, for their hard work in making the conference a great success. Franklin D. Roosevelt described the peaceful atmosphere and the healing qualities of the area as “The Spirit of Warm Springs.” Everyone in attendance truly felt “The Spirit.”

April 12, 19 and 26, 2009

Due to the 10th International Conference: Living with Polio in the 21st Century, the PHI office will be closed at the end of the business day (CDT) on Monday, April 20, 2009, and will reopen at 9:00 am on Tuesday, April 28, 2009.


A request from The Christopher and Dana Reeve Foundation. Living with paralysis? Care about the cause? Be counted ( ... Literally, place yourself on their map. Show the world how many people are affected by paralysis.


The Center for Self-Determination Bi-partisan Call to Transform Medicaid recently helped coordinate a nationwide mail out requesting signatures on a bipartisan call to reform Medicaid and nearly 1,200 people have responded by signing on. You may access the document by visiting They are now entering stage two of this grassroots movement to change the very nature of the Medicaid long term care program to make it fairer and more equitable with an end to the institutional bias. They also intend to make the available dollars come under the control of the person who is the beneficiary together with any assistance that person may desire from friends, family and freely chosen allies.

They have set an ambitious goal of 10,000 signatures before the end of April. To learn more and to sign the bi-partisan call yourself, visit

April 5, 2009

From Mary-Ann Liethof, Polio Network Victoria, Australia

"PPS: Shades of Grey,” an edited version of clinical interviews conducted with North American Post-Polio Specialists in 2008, has been uploaded to YouTube in 24 parts (25 with the Trailer).

March 22, 2009

Individuals who register for "Living with Polio in the 21st Century" receive a confirmation in the mail and later will receive a survey from RWSIR. Please return it promptly. Registrations mailed by March 21st will be processed and accepted as space allows.

March 15, 2009

PHI is looking for children of polio survivors who would be willing to speak with other children about their parent's late effects of polio. If you are interested, send your name and contact information to

logo for WE'RE STILL HERE! October 11-17, 2009

March 8, 2009

PHI is looking for ideas for the focus of "WE'RE STILL HERE!" October 11-17, 2009. In 2007, we wrote "Letters to the Editor." In 2008, we spoke at Rotary meetings. The purpose of the week is to call attention to the accomplishments and needs of the survivors of polio. Do you have a unique idea for 2009? Send it to

March 1 , 2009

Seeking job networking synergies, I am a professional freelance copyeditor, writer, and proofreader — as well as an enthusiastically creative polio survivor. I am experienced in Internet research, web content development, educational K-12 achievement and clinical/ intelligence test development. I have applied reality-based organizational skills to electronic database management, creation of medical educational materials and grant proposals for teaching hospital programs, effective resumé development, newsletter production, and doctoral dissertation editing — even medical transcription. I appreciate variety. I’m fortunate to have worked in industries such as educational publishing, healthcare, marketing and advertising and non-profit disability advocacy. Always a good listener, I strive to connect and mentor younger generations by sharing my “know-how” of electronic and hard-copy manuscript editing, editorial style formulation, and the importance of deadline-sensitive content accuracy. I am proficient in Microsoft® Office Suite and Adobe® Acrobat® Professional software, and have an absolutely necessary working knowledge of The Chicago Manual of Style. Professional organizations include Editorial Freelance Association, EFA: and Post-Polio Health International, PHI: My hobbies include interesting-book reading, classical piano studies, needlepoint, cooking, and “joint pain-free” gardening (I’m working on that). If you have a freelance project we could partner in, please feel free to contact

Are you looking for employment that can be accomplished electronically and long distance? Send your qualifications to

February 23, 2009

Update (2-23-09) on Lodging Information for

Logo for Post-Polio  Health's 10th International Conference

February 15, 2009

A message from AAPD: The Community Choice Act will be reintroduced soon. Rather than start all over again building the number of cosponsors, we want to have the bill reintroduced with as many initial cosponsors as YOU help us get.

Ask your U.S. Senators and Representative in Congress to become initial cosponsors of the Community Choice Act (CCA).

February 8, 2009

Would your group or company like to reach 300+ polio survivors and health professionals during the third week in April, with the potential to reach another 500+ after the meeting? Organizers of PHI's 10th International Conference, "Living with Polio in the 21st Century," are now accepting applications for exhibit space (10 booths) and/or advertisements in the program booklets (one for each of the three days).

February 3, 2009

New from National Center on Physical Activity and Disability (NCPAD): 14-Week Plan for a Healthier You. You can sign up to receive weekly tips from NCPAD’s Virtual Trainer that will help keep you motivated to stay on track for your health and fitness goals for 2009. Weekly tips will include information on topics such as nutrition, workout ideas, fitness equipment, weather, motivation tools, written and video resources, and more. You will also receive forms that will allow you to log your progress as well as ideas for rewarding yourself when you meet your goals. This 14-week program officially starts on February 14th. Celebrate American Heart Month by recruiting your friends and going to to sign up.

January 18 through February 2, 2009

collage of newspaper headlines with The Polio Crusade type in a circle and a photo of a nurse holding a child with leg bracesThe Polio Crusade will air on American Experince on most PBS stations on February 2, 2009. Check your local listings. The Polio Crusade, a one-hour documentary from filmmaker Sarah Colt (Geronimo, RFK), interweaves the personal accounts of polio survivors with the story of New York lawyer Basil O’Connor who tirelessly fought on their behalf while scientists raced to eradicate this dreaded disease. His innovative public relations campaign transformed polio into a nationwide cause, as he took an unlikely new approach, turning to the public for donations. Based in part on the Pulitzer Prize-winning book Polio: An American Story by David Oshinsky, The Polio Crusade features interviews with historians, scientists, polio survivors, and the only surviving scientist from the core research team that developed the Salk vaccine, Julius Youngner. (Press release)

Polio survivors interviewed include PHI’s Board President Lawrence C. Becker and several individuals from Wytheville, Virginia.

January 11, 2009

It wasn't a typo! Some reader's of "The Amendments Act of 2008" by Jacquie Brennan of Southwest ADA Center in the fall issue of Post-Polio Health questioned the "not" in this sentence.

People who are regarded as being disabled are not entitled to reasonable accommodations or modifications. Previously, courts had debated whether the ADA required having to accommodate a disability that didn't actually exist.

Ms. Brennan explains, "It goes back to the definition. Remember that the ADA covers people who meet the definition (physical or mental impairment that substantially limits one or more major life activities), who have a record of an impairment, or who are "regarded as" having an impairment. For people who are regarded as having an impairment, but do not actually have a disability, there is no "reasonable accommodation" available because they don't actually have a disability. This comes up most often with facial disfigurements or burns. The person doesn't have a disability, is not limited in a major life activity, but may be "regarded as" having a disability by, say, a potential employer. Because the person does not have a disability, there is no need for a reasonable accommodation."

January 4, 2009

The US SSA (Social Security Administration) has announced that it will be the first government agency to utilize the Nationwide Health Information Network (NHIN). Beginning in early 2009, Social Security will receive medical records for some disability applicants electronically through the NHIN gateway, which is expected to speed up the processing of disability claims.

December 21, 2008

The Board and Staff of PHI wish you joy and good health. May we each play a role in making the Earth a better place for all humankind.

Help us reach our fundraising goal to support our work of enhancing the lives and independence of polio survivors through education, advocacy, research and networking ...

... Donate in honor or in memory of an admired ventilator user.
... Donate in support of this comprehensive website.
... Not a Member? Join PHI.

December 14, 2008

Internet Study–Health Promotion for Women Aging with Physical Disability: The Baylor College of Medicine Center for Research on Women with Disabilities (CROWD) is testing an online self-help, interactive health promotion program called the "Garden of Wellness." This creative Internet program is designed to increase knowledge about exercise, nutrition, stress management, and the use of health care services; to improve health behaviors; and to reduce isolation and increase connectedness for women with functional impairments. The Principle Investigators are Drs. Margaret A. Nosek and Susan Robinson-Whelen.

Eligibility is being a woman who is at least 45 years of age, who has access to a computer with a high-speed Internet connection about 2-4 hours per week and who likes learning to use computers, and who has had a physical limitation, disability, chronic illness or health condition that limits activities for at least one year. Participants will be randomly assigned to two groups – an online intervention group for 8 weeks or a control group (that will not have access to the program until 6 months later). All participants will complete some surveys and receive payment for participation in either group.

Interested? Reply to or call 713-523-0909. CROWD staff will call you back to tell you more about the study and conduct a telephone interview to confirm your eligibility.

December 7, 2008 - Your Source for Reliable Health InformationThe Office of Disease Prevention and Health Promotion (ODPHP) launched a completely redesigned making changes to the home page, including the addition of a link to the new 2008 Physical Activity Guidelines for Americans.

The Quick Guide to Health Living section provides easy-to-understand information on key prevention issues.

November 23, 2008

Reminder to People with Medicare in the US

Between November 15 and December 31, people with Medicare have the right to change their Medicare private drug plan or enroll in one for the first time. Experts advise people to review their plans even if they are satisfied. The plans change from year to year. (You should have received your Annual Notice of Change by now.)

November 16, 2008

logo for Center on Disability StudiesCALL FOR PROPOSALS from CDS for the
25th Annual Pacific Rim Conference on Disabilities, 2009: Working towards a brighter future scheduled for May 4-5, 2009 in Honolulu. Proposal deadline is December 12th.

November 9, 2008

New on the web by Reji Mathew, PhD, polio survivor and psychotherapist/clinical instructor at New York University ... Energy Conversation: The art of pacing to foster maximum functionality

November 2, 2008

Have you gotten your flu vaccine for this year?

For more details about the vaccine, call CDC at 800-CDC-INFO or visit
To learn where to get a flu vaccine, contact your doctor or local health department.

October 26, 2008

“We've done our bit for the cause.” Mary Ellen Stan (

Find out what the San Gabriel/Pomona Valley Polio Support Group accomplished!

Photo of Mary Ellen Stan in the San Diego airport waiting area.“Here is a photo of me in the San Diego airport awaiting a flight to Austin. The gate attendant asked me what the pin stood for, and after my explanation, she got on the PA system and announced it to everyone sitting there waiting to get on the plane (about 100 people). A passenger with a medical background came over to talk to me and my sister (who was also wearing her pin) further about polio and the "We're Still Here!” campaign.

Photo of Mary Ellen Stan speaking for Claremont Rotary“Dick Stoney's letter that we sent to you previously was printed in at least two papers, and he has received a half dozen phone calls from interested parties.

“And my speech at the Claremont Rotary Club today went well; we are hopeful that one of them will address our group at our January meeting. A lady came up to me to find out if there is a test to find out if you've ever had polio because her husband thinks he may have had it. He grew up in Mexico and remembers having to be pulled around in a wagon, and now he is in some pain. I referred her to my polio doctor – wouldn't it be grand if his life improves as a result of this speech?“

October 20, 2008

The John P. Murtha Neuroscience and Pain Institute, Johnstown, Pennsylvania, online registry of polio survivors is once again active and ready to enroll participants. 

October 12, 2008

Plan now! Click logo for more details ...
click logo to access We're Still Here! information

October 5, 2008

image of poster for VIP Exhibition LaunchThe fight against polio is told through the photographs of London polio survivor and advocate Gautam Lewis, who recently returned to his birthplace of Kolkata, India, to immunize children against the disease and document his experience. The undertaking of polio eradication led by Rotary and its partners is further illustrated by the images of photographer Jean-Marc Giboux.

The photographic exhibition is free and open to the public every day from Tuesday, October 14, until Saturday, October 18, 2008; Tuesday–Friday, 10:00 a.m.–6:00 pm; Saturday, 10:00 am–4:00 pm; Menier Chocolate Factory, Ground Floor Gallery, 53 Southwark Street, London SE1 1RU.

September 30, 2008

Buttons Available for WE'RE STILL HERE!

image of square WE'RE STILL HERE! button image of round WE'RE STILL HERE! button

September 21, 2008

Are you a polio survivor who uses one of the LTV® Series ventilators? If so, please contact to learn about a fun project in which you may want to participate.

August 31, 2008

"The Miracle of Hickory: The 1944 Emergency Polio Hospital" Exhibit is now open at the Hickory History Center at 310 North Center Street, Hickory, North Carolina.

The exhibit is open until 2011, and details the amazing 54-hour construction of the Emergency Polio Hospital in Hickory. The exhibit features several photographs of the Emergency Hospital, as well as personal items and stories from polio patients treated at the Hospital. Additions are being scheduled for the exhibit, and will include a photography exhibit highlighting more personal pictures. Please watch for more details.

Several programs are being organized in cooperation with the exhibit. On September 7, 2008, the author of Blue, Joyce Moyer Hostetter, will be at the Hickory History Center for a meet and greet with guests. The event is free and starts at 2pm.

Group tours for 10 or more are welcome, but it is requested they call in advance to set up a tour time.

For further information, or to set up a tour, please contact Heather Deckelnick, Site Manager and Curator of the exhibit, at 828-324-7294; or email at

August 17, 2008

Join us at Logo for Roosevelt Warm Springs Institute for Rehabilitation for

Logo for Post-Polio Health's 10th International Conference
Click for details …
PHI’s 10th International Conference
Pre-Conference Wellness Retreat

August 10, 2008

Reunion invitation for September 13th to those who were a patient, employee, physician, volunteer or construction worker at the Children’s Free Hospital, Farmington, Michigan.

August 3, 2008

SAVE THE DATE! Universal Design Summit III: Creating Livable Homes & Communities, Sept. 21-23, 2008, Saint Louis University, Saint Louis, Missouri

Universal Design Summit III continues its tradition of providing outstanding content in universal design features in housing, sustainability, community design, green design and affordability with a focus on homes and communities for everyone.

CEUs (AIA, AOTA, ASID and others) are available. For more information:; 314-588-7090

July 27, 2008

image of Grace R. Young, OT's new blogNew Blog at Grace R. Young, MA, OTR/L, is a polio survivor and retired occupational therapist. (Note: Grace passed away Friday, January 23, 2009.)

For many years she was the post-polio resource person for all the Kaiser-Permanente medical centers in Southern California and taught classes in energy conservation.

Check out her blog that covers various topics related to living well with a disability.

UPDATE: To find Grace’s writings of advice, go to

July 20, 2008
Underserved? Need a rehabilitation physician?

PHI has been contacted by a gentleman who will be completing his residency in June of 2009 in Physical Medicine and Rehabilitation at the University of Washington in Seattle, with Dr. Walter Stolov. He would like a position for at least a year in an underserved area of the world.

Please contact for details.

July 13, 2008

From British Columbia:

Guidelines for Establishing a Water Exercise Program for Post-Polio Participants (2006) by Lanny Taschuk and Patrick Fleck is available for a charge of $12 (Canadian) plus shipping and handling from the Post-Polio Awareness and Support Society of British Columbia.

July 6, 2008

WHO's Surgical Safety Checklist:

You've heard about it, but have you seen it?

WHO surgical safety checklist [pdf 445kb]

Implementation manual [pdf 1.56MB]

June 29, 2008

U.S. Food and Drug Administration (FDA) has approved KINRIX™ [Diphtheria and Tetanus Toxoids and Acellular Pertussis Adsorbed and Inactivated Poliovirus Vaccine], a combination vaccine by GlaxoSmithKline offering protection against diphtheria, tetanus, pertussis and polio diseases in one shot. It is approved for children ages 4-6. Also getting approval was Sanofi Pasteur's five-in-one shot for diphtheria, tetanus, pertussis, polio and illness due to Haemophilus influenzae type b, or HiB. For details on this and other approved vaccines, check out Vaccines Licensed for Immunization and Distribution in the US.

Also, check out Vaccines and Immunizations

June 22, 2008

image of three people with disabilitiesThe Washington University Program in Occupational Therapy, in St. Louis, Missouri, is recruiting participants for a study that aims to understand what people with sensory and/or mobility impairments do in their daily life, how their environment affects their community participation and what, if any, help they need to complete these activities. See Study of Community Participation.

June 15, 2008

photo of the location of the first post-polio clinic in MexicoAnnouncement: The first post-polio clinic in Mexico is currently receiving polio survivors, providing them with evaluation, diagnosis and treatment, regarding late effects of polio. This clinic is part of the Instituto Nacional de Rehabilitación, a health national institute of the Mexican government, which is dedicated to rehabilitation medicine.

Dr. Alejandra Castillo Millán
Tel 59 99 10 00, ext 11 125 y 11 126

Dr. Teresa de Jesús Baños Mendoza
Tel 59 99 10 00, ext 13 115

For more information see LITAFFAC or OMCETPAC.

June 8, 2008

logo for PHI's 10th International Conference
Join us in Warm Springs, Georgia, at

Roosevelt Warm Springs Institute for Rehabilitation logo

for the 10th gathering of the post-polio community
coordinated by Post-Polio Health International.

The extensive program will provide polio survivors tools to live well with the late effects of polio; offer a forum for the exchange of ideas among survivors, families and health care professionals; and explore the history and legacy of the polio epidemics and its survivors. (The conference is scheduled to begin at 1:00 pm on Thursday, April 23, 2009. The final educational session will end at 4:00 pm on Saturday, April 25, 2009, but there will be a social event on Saturday evening.

Hotel accommodations will vary in cost and luxury. Watch for details.

Interested in a pre-conference retreat that will go one-step beyond re-rehabilitation and focus on health and wellness? A Post-Polio Wellness Retreat is being planned for Sunday, April 18, 2009 – Thursday, April 23, 2009. It will be modeled after the popular retreats held at Bay Cliff Health Camp in Big Bay, Michigan. Want to know more? Watch the 10-minute DVD "Holistic Health and Wellness Retreat for Polio Survivors."

June 1, 2008

Polio Survivors needed for Post-Polio Syndrome study

photo of Conemaugh Health Systems's John P. Murtha Neuroscience Institute If you have fatigue, weakness, joint or muscle pain, difficulty with memory, concentration or attention, you may be experiencing post-polio syndrome (PPS). Dr. William DeMayo and colleagues (Johnstown, Pennsylvania) are investigating problems involving mental fatigue that may affect concentration, memory, attention, etc.

Qualified participants will receive the following free study-related items:

  • Physical and Neurological Exams
  • Laboratory Testing
  • Neuropsycological testing

If you are at least 18 years old, have a history of polio and are facing the problems described above, please contact the study nurse coordinator, Janet Goodard, RN, at 814-269-5288, 800-585-5875 or for more information and to determine if you might be a candidate for the study. The study will last a total of 2 to 4 weeks and require 2 to 3 visits to Conemaugh Health System, Johnstown, Pennsylvania.

May 25, 2008

Update on Global Eradication
Total Cases Year-to-date 2008 Year-to-date 2007 Total 2007
Globally 453 171 1313
-in endemic countries* 432 145 1207
-in non-endemic countries 21 26 106

*Afghanistan, India, Nigeria, Pakistan

Source: Global Polio Eradication Initiative

photo of Ray Taylor displaying an enlarged image of the $10,000 check from the Pinehurst Rotary Club.May 18, 2008

Ray Taylor, post-polio support group leader in Pinehurst, North Carolina, and founder of Rotary Polio Survivors and Associates Action Group (PSA) displays the $10,000 check for the Rotary International’s PolioPlus Campaign from the local Pinehurst Rotary Club, tripling the amount requested from Rotary International.

Taylor and current Chair of PSA, Ann Lee Hussey, invite survivors who are Rotarians to stop by the PSA booth at the 2008 RI Convention in Los Angeles, June 15-18.

May 11, 2008

logo of National ADA Symposium & ExpoStop at the PHI or IVUN exhibit booth (#629) at the
National ADA Symposium & Expo Assistive Technology Consumer Fair
May 12-13, 2008
America’s Center-Hall 1
Saint Louis, Missouri.

Photo of Joan Headley, Mary-ann Liethof and Jill Pickering in the PHI office.May 4, 2008

Australians Mary-ann Liethof, and Jill Pickering pictured with Joan L. Headley (left) in the PHI office.

Liethof and Pickering are on a five-week tour of North American post-polio centers.

Writing Poetry to Heal the Spirit: A message from Mary McManus

April 27, 2008

New approach to housing in Cambridge, Maryland, for aging polio survivors. From Mary Esther Boyd, Cambridge Harbor Development, LLC (

I am looking for "a few good men and women" who might be interested in condominium housing in Cambridge, Maryland that would be constructed specifically for the needs of post-polio persons as well as others with similar needs. My name is Mary Esther Boyd and we have an approved project in Cambridge, Maryland for eight elevator townhouse projects and two cottages across the street from Cambridge Creek.

Our approved townhouses are four stories. The cottages are two stories. Each unit is allotted one parking space and one garage space.

We are proposing to upfit eight units with all the power, back-up power, amenities, and security that would be required to make these comfortable and safe homes for post-polio persons. The two cottages would be reserved for attendants.

A rough estimate of the cost of each of the eight units is $500,000. We are wondering if there are any people possibly interested in this project and, if interested, what amenities and needs would need to be built in. Once we know of at least ten interested buyers we would create an architectural drawing and budget for each unit. After modification we would need permission from the city to modify our existing drawings and, if permission is obtained, we would create commitments from buyers sufficient to obtain proper financing for construction. If financing cannot be obtained there is no obligation to buyers.

Cambridge, Maryland, is near Washington, DC, at the confluence of the Chesapeake Bay and the Choptank River. Two of the leading research institutes nearby are the NIH and Johns Hopkins University. We hope to make this project a model for construction for post-polio syndrome and other neurological diseases and that the experience in the whole process can teach us lessons for the future as we try and meet the needs of these very special groups. We also hope that the proximity to federal and private research and clinical institutions can serve as a motivation for new discoveries for this community.

More about the company: Cambridge Harbor Development, LLC is a small niche development company interested in developing properties not usually of interest to large developers. We have renovated low-income properties in Washington, DC, as well as Cambridge, Maryland, that we have made available to immigrant and Hispanic families unfamiliar with real estate in America. We also have developed waterfront and upscale properties in St. Michaels, Maryland, and Lewes, Delaware. We have a particular interest in neurological conditions as one of our family members has the challenges of post-polio syndrome and one of our cousins suffered from MS. References would be available to any interested buyers. We are hoping that if this small project is successful we may be able to persuade other developers to upfit housing for the neurologically impaired.

April 21, 2008

Patient Advocate News (PAN) is an e-newsletter to be published six times a year by NeedyMeds, Inc. (a 501(c)(3) nonprofit with the mission of helping people who cannot afford medicine or healthcare costs). To sign up, go to

April 13, 2008

PHI announces date of 2008 Campaign ...
logo for We're Still Here October 12-18, 2008
Watch for details.

April 6, 2008

Polio Network of New Jersey's 18th annual conference Sunday, April 13th at Bridgewater Marriott Hotel. For details: or contact Speakers include Frederick M. Maynard, MD and Joan L. Headley.

March 30, 2008

"Ideas hosted by Paul Kennedy," a popular CBC Radio program, will repeat "Remembering Polio" (written & produced by Maria Meindl) on April 3rd and April 10th at 9:00 pm. Click here for details.

March 23, 2008
You’re invited!

"Hope and the Human Spirit – Overcoming Polio" is the title of an exhibit at the Reno County Museum, Hutchinson, Kansas, opening March 29, 2008 from 1:00 pm – 4:00 pm. The exhibit is in partnership with the Central Kansas Polio Survivors Group, led by ventilator user and polio survivor Jean Graber. For details email or call 620-662-1184. From The Hutchison News

March 16, 2008
Post-polio groups respond to recent media messages:
RE: Parents in Belgium threatened to be jailed for not immunizing …

Johan Bijttebier, PostPolio België,, reports that the threat of jail was for NOT showing up in court when asked to appear to discuss the immunization issue. Last year a couple who did show up was assessed a fine of 140 Euros.

RE: “the poliovirus having been imported from Mexico or Canada.”

Sergio Vistrain Diaz, Organización Mexicana Para el Conocimiento de los Efectos Tardiós de la Polio, AC (OMCETPAC),, reports the following:

  • The last 7 cases of wild poliovirus cases occurred in 1990 (Source: Pan American Health Organization “Polio Weekly Bulletin”).
  • Regarding coverage, the following information refers to December, 2005 campaign, which reports 93.2% for less than 1 year old population, and 99.3% for less tha 4 years old population (Source: Consejo Nacional de Vacunación. “Vacunación y Vigilancia Nutricional”).
  • The first Vaccination Week National Campaign was carried out from 17 to 23 of February, 2008 (Source:

Christopher J. Rutty, PhD, Medical Historian – Health Heritage Consultant, Toronto, Canada,, reports the following:

As far as Mexico and Canada being sources of poliovirus being imported into the US, I haven't found any recent evidence of it. There has not been any polio cases reported in Canada since 1995, which itself was an imported case from India. It's possible that Canada may indirectly import poliovirus into the US through people travelling from polio endemic countries, although the risks of such importations into the US directly from polio endemic countries would be far higher than originating directly or indirectly from Canada. Daily international travel traffic directly into the US originating from polio endemic countries it seems to me would dwarf such traffic arriving into the US from Canada or Mexico .

Until wild poliovirus is officially eradicated, the risks of its importation into the US will remain high, especially directly through international travel from polio endemic countries.

Also, the latest figures on overall polio immunization rates among children 19-35 months in the US from 1995 and 2000-2005, available from the CDC's publication "Health: 2006", indicates that the polio immunization rate has increased over that period from 88% in 1995 to 90% in 2000, to 92% in 2005. The stats (Table 81 in the "Health: 2006" book) also break down into various ethnic and economic categories, although the polio immunization rates are still in the 90% area among the "below poverty level" group. See:

March 9, 2008

PHI's Fifth Research Grant: PHI received seven Phase 1 grant proposals representing three countries (Canada, Italy and the United States). PHI will notify the applicants by April 14, 2008 if they are invited to send Phase 2 information, which is due June 16, 2008.

March 2, 2008

PHI Association Members will receive their PHI Communiqué enewsletter this week. Want to be an Association Member? See PHI's Association Membership Invitation and PHI's Association Membership Application.

February 24, 2008
Reminder: Phase 1 proposals for The Research Fund must be postmarked Monday, March 3.

February 17, 2008
Tax rebate information for Social Security Beneficiaries

View FS-2008-16, Stimulus Payments: Instructions for Low-Income Workers and Recipients of Social Security and Certain Veterans’ Benefits or for general info go to

February 10, 2008
Old braces wanted …

The American Academy of Orthopedic Surgeons 75th Anniversary Project Team is looking for bracing used by polio survivors years ago. If you have any to loan or donate please contact Sandy Gordon

February 3, 2008
Electronic Newsletter received: Foundation To Encourage the Potential of Disabled Persons.

January 27, 2008

It’s time to update Post-Polio Directory for 2008. Check your current entry in Post-Polio Directory 2007 and email with your full name and one of two messages:
1) Correct or 2) Make these changes.
Don’t miss your chance to be listed!

January 20, 2008

Reji Mathew, PhD, author of “Keeping America Sick” (in the Fall 2007 issue of Post-Polio Health) will be writing a mental health series to inform health care providers on the psychological aspects of recovery and rehabilitation for Advance for Occupational Therapy Practitioners. Check out her first column and her guest editorial.

January 13, 2008

Check out the European Polio Union ’s new website –

January 6, 2008

The world now has its best chance to eradicate polio: Only four parts of four countries have never interrupted indigenous wild poliovirus transmission: Nigeria, India, Pakistan and Afghanistan. Link here to more information and see "Country Focus."

December 30, 2007

Our offices will be closed New Year's Day 2008.

PHI sends best wishes to its Members, Friends and Supporters and reminds everyone that the DEADLINE FOR PHASE 1 for the Call for Proposals for The Research Fund for Post-Poliomyelitis and Neuromuscular Respiratory Research is Monday, March 3, 2008.

December 20, 2007

PHI's offices will be closed from 12:00 noon CDT on December 21 until 8:00 am CDT on December 26, 2007.

December 16, 2007

Twin Voices: A Memoir of Polio, The Forgotten Killer by Janice Flood Nichols has received honorable mention for nonfiction and biography in the London Book Festival Award competition. See excerpt at Memories to Honor and to Heal. Information about the book is on PHI's "Books about the Polio Experience."

December 9, 2007

PHI's affiliate, International Ventilator Users Network is mailing its newly updated 2008 Resource Directory for Ventilator-Assisted Living this week to Members at the Contributor, Sustainer, Bronze Sustainer, Silver Sustainer, Gold Sustainer, and Platinum Sustainer levels. The Resource Directory lists Health Professionals, Ventilator Users' Listservs, Ventilator Equipment and Aids with Manufacturers' Addresses, Organizations, Associations and Foundations, and Facilities with Long-term Ventilator Units. For more information ...

December 2, 2007

StandProud, formerly IPVRC, issued its first newsletter. Joan L. Headley, PHI Executive Director joins board.

November 18, 2007

Members of PHI: The Fall Post-Polio Health (Vol. 23, No. 4) has been mailed. The issue features “My Journey through the Basics of Post-Polio Breathing Problems” by Nancy Baldwin Carter, “Keeping America Sick,” by Reji Mathew, PhD, a younger polio survivor, and more. Want to receive the newsletter? Become a Member of PHI.

November 11, 2007

Post-Polio Health International's Annual Report for 2005/2006 is now online.

November 4, 2007
Photos from Polio Network Victoria (Australia)
Review of Polio Day 2007

New Internet Domain Targeting Volunteers from the Foundation To Encourage The Potential Of Disabled Persons based in Thailand

The Foundation recently published its 8th book title,“A Volunteer Handbook – Getting It Right,” which is now available in English free of charge in both a hardbound edition and by downloading the entire book from our new website:

The book provides broad volunteer guidelines as well as hands-on practical information for individuals, NGOs and government agencies. The website and book design were generously contributed by Mr. Mike McCune at – friend and webmaster for many years. Hardbound copies were funded by Liliane Fonds of the Netherlands.

My Polio Life is a 16-page “patient questionnaire providing base line information and comparison charts on the life of a polio survivor.” Developed by the Lincolnshire Post-Polio Network (UK), “the questionnaire is to help you provide pertinent information for your health professionals and could also be used to collect and collate statistics on issues being discussed in your county/state/country.”

The questionnaire can be downloaded from

The group would like you to complete the survey for you and your physician, but they also would like you to photocopy it and send it back to Lincolnshire Post-Polio Network, PO Box 954, Lincoln, Lincolnshire, LN5 5ER UK , so it can be complied with the responses of others. Please notify, if you plan to send in your survey, so she can keep a running tally.

October 28, 2007
PHI's Fifth Research Grant: Call for Proposals
Are you a researcher with innovative ideas?

October 21, 2007

European Polio Union rallies; Gets attention of 75 MEPs

photo of EPU demonstration in Ireland

photo of EPU members with signs

Members of the European Polio Union (EPU) paraded in the centre of Brussels on October 16, 2007 to bring more attention to the needs of people with polio in Europe. Photo of EPU members with signs for paradeMember states of the EPU are Belgium, Denmark, England, France, Germany, Hungary, Ireland, Italy, The Netherlands, Spain, and Switzerland. Prior to the rally, the groups gathered the signatures of 75 Members of the European Parliament (MEP) in support of the cause.

Photo from John P. Murtha Neuroscience and Pain Institute in Johnstown, PA.The John P. Murtha Neuroscience and Pain Institute, Johnstown, Pennsylvania, launched a new online registry of polio survivors to promote research. The web address is

From left to right: Thomas M. Kurtz, MBA, Vice President of Governmental Affairs & Business Development, Conemaugh Memorial Medical Center; Barbara J. Duryea, MSN, RN, CPHQ, Director Research and Development, John P. Murtha Neuroscience and Pain and Institute (JPMNPI); Steven E. Tucker, President, Conemaugh Memorial Medical Center; William DeMayo, MD, Medical Director and Principal Investigator, Polio Program, JPMNPI.

October 14, 2007

PHI Board Chair featured as WE'RE STILL HERE week (Oct 14-20, 2007) begins ...

Be sure to check out the audio gallery, too.

and thanks to the many individuals and groups who have joined the campaign by writing "Letters to the Editor," initiating feature articles, discussing on internet radio shows, planning book signings, organizing special support group meetings, and writing to members of parliament to mention a few activities. The week has just begun!

October 3, 2007

WE’RE STILL HERE: Have you written your letter?

Helping Each Other Help Others

Nancy Baldwin Carter, Omaha, Nebraska 

Q: I have been a support group leader for years and I was surprised how difficult it was to decide what to write in my letter to the editor. Can you help me understand why it was so difficult?

A: Remember that line in Shakespeare’s Two Gentlemen of Verona? The guy is supposed to write a letter for the woman he works for, and he makes such a production of it in his own mind …. Finally she says, “Perchance you think too much of so much pains.” I’ll bet we all do this to ourselves sometimes – think so much about doing something, that we drive ourselves batty.

Maybe the task takes on too much importance. If we’re not used to the job, perhaps it seems to be something out of our league. Could be, a touch of self-doubt creeps in – the “I’m not good enough” feeling that we are sure proves our lack of worth.

Then we start projecting: “Oh man, I’m going to say something that sounds really dumb; I’ll embarrass myself in print; everyone in town is going to see it – what am I doing! I’ll have to change my identity and move to Bhutan !”

Truth is, it’s merely 200 words in the Public Pulse. Editors love letters like this. WE’RE STILL HERE! is something important and real – they get to pass on relevant information. If our letters don’t fit in a space or seem to need a word change, editors will fix them.

We’ll never get all that needs to be said into such a short letter. It’s important to pick only an issue or two – will it be the fact that many polio survivors contribute immensely to their communities? Or a short explanation of the universal need for barrier-free surroundings? Or the significance of everyone’s having access to opportunity, to jobs, to good health care, and to health insurance? Whatever. We can take a look at the suggested issues listed on the PHI website if we’d like help. Focus narrowly. Then go for it.

We must remember to mention the name: the WE’RE STILL HERE! campaign. And the dates: October 14-20. And a brief explanation about why the campaign exists: How about to let the public know who we are? Or to locate additional polio survivors, young and old? Or to educate others about post-polio syndrome? Or to publicize our serious need for health professionals? We’ll find even more great ideas under “A Few Possible Talking Points” on the PHI website.

When I was a kid, I really wanted a decoder ring. Didn’t everyone? As I recall, all I had to do was write twenty-five words about WHY I wanted that ring, send it in to the listed address (could be some box tops were involved as well), and the ring was mine. I labored over that letter for hours. I wanted to say just the right words to convince them I deserved the ring. I didn’t know there’s no such thing as “perfect,” that what really mattered was simply that I wrote the letter. The prize was in the doing – they were going to send me the ring. 

Whatever we write to these editors about WE’RE STILL HERE! is going to be fine. We’re all bright polio survivors who have dedicated years to post-polio efforts. What we have to say will be terrific. Most of our letters will be published and read – and we’ll all be the better for it.

One polio leader I heard from the other day said, “I don’t know. What I’m writing about sounds an awful lot like we’re tooting our own horn.”

Hurrah! Toot away! If we don’t take our ideas to the world, who will? This is our big opportunity to let everyone know that we’re not those plucky little poster kids any more – we’re all gown up, doing our share, and delivering a message that will surely help our communities prosper. Good for us. WE’RE STILL HERE!

European Polio Union (EPU) to meet in Brussels Oct. 16-17, 2007

The EPU has organized a two day EPU-action on October 16 and 17 in Brussels.

Representatives from the member countries will meet for a demonstration at 3:00 pm on the 16th at the Luxemburg station (near to the back entrance of the European Parliament) followed by a meeting of the members. On October 17, on the invitation of Bart Staes (Greens/EFA) the EPU will conduct a hearing (Room PHS 4B01 of the EP, starting at 11 am). Top scientists on post-polio syndrome, Professor Kristian Borg from the Karolinska Institute (Stockholm, Sweden) and Professor Frans Nollet from the Free University of Amsterdam (The Netherlands) will speak about post-polio syndrome and stress the need to work together on a European level.

The group has secured the signatures of 72 Members of the European Parliament (MEPs) on a petition stating, “We therefore call upon The European Union to ensure Post-Polio Syndrome is correctly acknowledged in all member states and that significant resources are put into its research, treatment and information requirements.”

The activities of the EPU have increased since the meeting in Como, Italy last March. The following countries are members of the EPU: Belgium, Denmark, England, France, Germany, Hungary, Ireland, Italy, Netherland, Spain and Switzerland.

September 24, 2007

WE'RE STILL HERE gains momentum … join the campaign!

October 14-20th, the dates of the WE'RE STILL HERE campaign, is 3½ weeks away. Have you written your "Letter to the Editor"? Here are the Top Ten Reasons everyone should do this now!
Nancy Baldwin Carter (

Top Ten Reasons to send a WE'RE STILL HERE Letter to the Editor

Be credible ... check your facts!

A few possible talking points

Activities Planned

September 17, 2007
"Ideas hosted by Paul Kennedy," a popular CBC Radio program, will repeat Remembering Polio on October 10th and 17th.

Wednesday, October 10

The polio epidemics of the 1950s struck thousands of Canadians, especially children. Braces, wheelchairs and the Iron Lung became symbols of the polio threat. By 1960, thanks to new vaccines, the virus was under control. Why then, almost fifty years later, are concerns about polio surfacing again? Maria Meindl traces the legacy of polio, a disease we thought we’d left behind.

Wednesday, October 17

Check for details.

September 3, 2007

Have you written your “Letter to the Editor” for the WE’RE STILL HERE campaign?

August 27, 2007

What’s next for the eradication of polio? Polio survivors who are Rotarians sent PHI an interview with Bob Scott, Chair of the International PolioPlus Committee and Chair of the Rotary Foundation Board of Trustees, who gives the most valid reasons why eradication is the answer, and why switching to control of acute poliomyelitis is not. He also candidly discusses the barriers and suggests activities to overcome them.

To read the interview

August 20, 2007
The Summer 2007 issue of Post-Polio Health (Vol. 23, No. 3) was mailed this week to Members of PHI.

It features a poignant article by polio survivor Janice Flood Nichols, Lockport, New York, and a reminder of the benefits of assistance dogs.

This issue also includes a brief update from the University of Arkansas for Medical Sciences (UAMS), Little Rock, regarding the search for a biomarker for post-polio syndrome, and a hopeful story about work being done in the DR Congo for children who had polio.

August 6, 2007For info about WE'RE STILL HERE! October 14-20, 2007,
PHI announces its WE'RE STILL HERE Campaign ... October 14-20, 2007.
Read more ...

What are PHI’s objectives?

July 30, 2007
Participants Wanted: Live in the DC or Johnstown, Pennsylvania area?
Check out this research opportunity funded by the Department of Defense.

Study Title: Investigation of Cognitive Function Status in Polio Survivors
with and without Post-Polio Syndrome

A research study of polio survivors is being conducted by Dr. Kimbra Kenney (DC area) and Dr. William DeMayo ( Johnstown , Pennsylvania area) and colleagues to investigate the problems involving mental fatigue that may affect concentration, memory, attention, etc. Qualified individuals will receive at no cost, the following study related items:

Study Description: This study’s objective is to assess if polio survivors with or without PPS are having significant problems affecting their capability to think clearly, to concentrate, pay attention, register and store memory, etc.

Time Requirements: The study will last a total of 2-4 weeks and required 2 visits to the study center that enrolled you.

You may participate if: You are a polio survivor and you are 18 or older.

Locations: Uniformed Services University of the Health Sciences (USUHS), Bethesda, Maryland, and Conemaugh Health System, Johnstown, Pennsylvania.

DC area: Please call the study Nurse Coordinator at 301-984-7755.

Johnstown area: Please call the Nurse Coordinator, Jan Goodard, RN, 814-269-5288. 

July 9, 2007
Celebrating Dr. Augusta Alba …

Coler Goldwater Specialty Hospital and Nursing Facility, New York City, celebrated "50 years of dedicated service to its patients and residents” by Dr. Augusta Alba and Dr. Masayoshi Itoh on July 19th, 2007.

Dr. Alba’s dedication and service to the numerous polio survivors and ventilators users around the world and to Post-Polio Health International and is legendary.

Won’t you send your note of congratulation and thank you to or mail a note to Dr. Augusta Alba, Coler Goldwater Specialty Hospital, 1 Main St Rm E3-3, Roosevelt Island, New York, 10044.