This week at PHI ...
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 (swensrud@pacbell.net) or Salk Institute for Biological Studies (858-453-4100).
From Prior Weeks at PHI ...
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 abraspp@abraspp.org.br.
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:
- www.beyondchron.org/news/index.php?itemid=8406
- http://lflegal.com/2010/08/paul-longmore/
- http://blog.historians.org/news/1111/paul-longmore-professor-of-history-advocate-of-the-disabled-dies-at-64
- http://www.fromthesquare.org/?p=1090
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 jgraber3@earthlink.net. Presenters include: Timothy A. Crater, MD, FACP; John G. Fan, MD; Joan Headley, PHI; and David P. Calvert, Attorney at Law.
July 27, 2010
WERE STILL HERE! October 10-16, 2010.
Visit a Rotary Club luncheon meeting telling them
WE’RE STILL HERE!
Suggestions and ideas available. Read more ...
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 – actionforaccess.mohistory.org. 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
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 litaffac@prodigy.net.mx (5255) 5574 2926 www.postpoliolitaff.org or http://www.conadis.salud.gob.mx/
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 http://www.postpoliomexico.org/Noticia25.html
- Asociación Postpolio Madrid (APPM), http://www.postpoliomadrid.org/
- Organización Mexicana para el Conocimiento de los Efectos Tardíos de la Polio, A. C. (OMCETPAC), http://www.postpoliomexico.org/
- Asociación De Polio Y Post-Polio De Cataluña (APPCAT), http://www.appcat.org/
- Asociación Polio Pospolio Argentina (APPA) / Asociación Incluir, http://ar.groups.yahoo.com/group/poliopostpolioargentina/; http://www.incluir-argentina.org.ar/
- Asociación De Afectados De Polio Y Síndrome De Post-Polio De Castilla Y León (POLIOCYL), http://poliocyl.blogspot.com/
- Asociación Gaditana De Personas Con Síndrome Post-Polio (AGASI), http://www.agasi.org.es/
- Asociación Valenciana Para La Defensa De Afectados De Polio Y Postpolio (ADUNCITAS), http://www.polio-pv.org/html/
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.
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 (info@poliocanada.ca; 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 fred.seale@rogers.com or jan.nichols@rogers.com. 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: to open up public spaces to health, whether it be activities in parks, town hall meetings, clean-up campaigns, or closing off portions of streets to motorized vehicles.
- 1000 lives: to collect 1000 stories of urban health champions who have taken action and had a significant impact on health in their cities.
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 www.post-polio.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.
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 www.post-polio.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.
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 www.post-polio.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.
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 www.ficcdat.ca. 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 info@post-polio.org.
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 www.socialsecurity.gov/extrahelp.
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: www.poliotoday.org.
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.
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.
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
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.
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 
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 www.baycliff.org. 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:
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 (lex.frieden@uth.tmc.edu) 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
DisabilityInfo.gov is now Disability.gov. 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
Hesperian 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 www.maryessert.com. 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
"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
... 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.
... 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 (http://campaigntocureparalysis.org) ... 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 www.centerforself-determination.com/docs/Bi-Partisan.pdf. 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 www.centerforself-determination.com/signon.html.
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 director@post-polio.org.
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 director@post-polio.org.
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: www.the.efa.org and Post-Polio Health International, PHI: www.post-polio.org. 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 carefuledits@aol.com
Are you looking for employment that can be accomplished electronically and long distance? Send your qualifications to editor@post-polio.org.
February 23, 2009
Update (2-23-09) on Lodging Information for
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 www.ncpad.org/14weeks/ to sign up.
January 18 through February 2, 2009
The 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.
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
... 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 cathyc@bcm.edu 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
The Office of Disease Prevention and Health Promotion (ODPHP) launched a completely redesigned healthfinder.gov 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
CALL 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 www.cdc.gov/flu.
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 (stan742631@aol.com)
Find out what the San Gabriel/Pomona Valley Polio Support Group accomplished!
“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.
“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 ...
October 5, 2008
The 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 21, 2008
Are you a polio survivor who uses one of the LTV® Series ventilators? If so, please contact director@post-polio.org to learn about a fun project in which you may want to participate.
"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 www.catawbahistory.org 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 historicharper@charterinternet.com.
August 17, 2008
Join us at 
for
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: udsummit@starkloff.org; 314-588-7090
July 27, 2008
New Blog at www.graceryoung.com 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.
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 director@post-polio.org 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?
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
The 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
Announcement: 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
June 8, 2008
Join us in Warm Springs, Georgia, at
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 www.post-polio.org 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
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 jgoodar@conemaugh.org 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.
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
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.
Stop 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.
May 4, 2008Australians 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
New approach to housing in Cambridge, Maryland, for aging polio survivors. From Mary Esther Boyd, Cambridge Harbor Development, LLC (maryestherboyd@comcast.net)
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 www.needymeds.com.
April 13, 2008
PHI announces date of 2008 Campaign ...
Watch for details.
April 6, 2008
Polio Network of New Jersey's 18th annual conference Sunday, April 13th at Bridgewater Marriott Hotel. For details: www.NJPolio.org or contact LeeBekir@njpolio.org. 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 jgraber3@earthlink.net 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, www.postpolio.be, 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), www.postpoliomexico.org, 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: http://portal.salud.gob.mx/contenidos/sala_prensa/sala_prensa_campanas/spots_radio.html).
Christopher J. Rutty, PhD, Medical Historian – Health Heritage Consultant, Toronto, Canada, www.healthheritageresearch.com, 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: http://www.cdc.gov/nchs/data/hus/hus06.pdf#082
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 www.irs.gov.
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 gordon@aaos.org.
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 webmaster@post-polio.org 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.
Check out the European Polio Union ’s new website – www.postpolio.eu.
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."
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 ...
StandProud, formerly IPVRC, issued its first newsletter. Joan L. Headley, PHI Executive Director joins board.
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.
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: www.volunteer.infothai.com
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 www.Infothai.com – 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 www.lincolnshirepostpolio.org.uk/downloads/extra/mypoliolife.pdf
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 mary.mccreadie@lincolnshirepostpolio.org.uk, 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
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. 
Member 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.
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 http://postpolio.conemaugh.org
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 ...
www.roanoke.com/news/roanoke/wb/135733
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
LEADERSHIP
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
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 (n.carter@cox.net)
Top Ten Reasons to send a WE'RE STILL HERE Letter to the Editor
Be credible ... check your facts!
- Radio show, "Talking Up Disability," to feature WE'RE STILL HERE
- Book signing in Johnstown, PA: Monday, October 15th
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
Part 1: REMEMBERING POLIO
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
Part 2: REMEMBERING POLIO
Check www.cbc.ca/ideas/features/polio for details.
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 www.rotary.org/newsroom/features/0709_tr_scott.html
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, 2007
What are PHI’s objectives?
- To educate about post-polio issues.
- To remind the general public of our successes and contributions.
- To find other survivors, including the oft-forgotten younger ones.
- To recruit health professionals to treat us.
- To initiate a comprehensive secure searchable database.
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:
- Physical and Neurological Exams
- Laboratory Testing
- Neuropsychological Testing
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 Karen.Gooding@nychhc.org or mail a note to Dr. Augusta Alba, Coler Goldwater Specialty Hospital, 1 Main St Rm E3-3, Roosevelt Island, New York, 10044.