For info about WE'RE STILL HERE! October 14-20, 2007, www.post-polio.orgWill you help by writing letters
to the editors in your area?

Here are some useful suggestions to help get your letter published.

DEFINITELY INCLUDE:

The name of this campaign: WE'RE STILL HERE.

A local contact, preferably your post-polio support group's name,
addresses and/or phone number.

PHI's web site (www.post-polio.org) as a resource.

The message: Explain concisely why there is still a need for polio information (including both the situation with the late effects of polio and the necessity for poliovirus eradication and continued vaccination efforts).

OTHER HINTS:

"Letters to the Editor" pages limit the length of the letters to approximately 200-250 words. It's a good idea to find out what that limit is for your paper and keep letters within that framework.

Get to the point. The best letters are timely and straightforward.

Newspapers edit letters for fact, grammar, length, clarity and taste. Make sentences brief and easy to understand.

"Letters" editors like local tie-ins to the news. Mention the local post-polio group's part in the WE'RE STILL HERE campaign. If it sounds interesting enough, a reporter from the paper or even TV may want to do a story about this. Groups should be prepared with information to handle an interview, just in case. Extra publicity is good!

Smaller newspapers may be happy to print a heading provided with a letter, rather than writing their own. Therefore, we suggest placing the heading WE'RE STILL HERE on letters contributed.

Tip: Using the active voice ("Help exists ...") rather than the passive voice ("There is help ..") makes for a livelier letter. Also, good details and personal experience are better than vague references.

Letters from anonymous contributors will not get published. Include your full name, address and phone number for verification purposes.

Whenever polio survivors read about help available to them, they are likely to contact the group offering that help. Therefore, groups participating in this campaign should be prepared for a possible influx of requests for information and support group activity.

Finding a complete list of your state's newspapers shouldn't be difficult. Online, the National Newspaper Association website (www.nna.org) lists state press associations under "Partners." Most libraries have Gale's Directory of Print and Broadcast Media, which lists names, addresses, phone numbers, and even e-mail addresses for newspapers in every state.

Sending this letter to as many newspapers as possible in your state could be advantageous. It's very little more time-consuming to send the same letter to ten papers than it is to send it only to one. Also many state press associations will distribute statewide for a nominal charge or sometimes free to nonprofits.


Need ideas for your letter?

Check out the five sample letters below and use as a guide to say what you want to say, or better yet, write your own. Below these letters you will find suggestions for support groups.

Sample Letter #1

This week marks the beginning of Post-Polio Health International's WE'RE STILL HERE campaign (www.post-polio.org). This has special meaning to me. For sure, I'm still here. I've been through a lot--most of which I never dreamed of when I was a kid trying to get my newly-paralyzed body to function again after contracting polio. And yet, here I am. I got through college and earned a masters degree. I had a long and exciting career as an educator. I married the one perfect man in America. And through it all I was able to deal with my disabilities in a way that brought meaning to my life.

You can bet I join with many others to promote PHI's efforts to tell the world that there are thousands of youngsters with disabilities who carry the hope of a promising future in their hearts. They, too, will learn, as those who went before them did, that individuals with disabilities have much to contribute. PHI wants to remind the world that we must never stop offering the opportunities for that to happen. And I want to do that, too. 'Cause I'm still here – and that means I can still make a difference.

Name
Address
Phone

Sample Letter #2

Post-Polio Health International initiated a WE'RE STILL HERE Campaign for the week of October 14-20, 2007 to alert communities about the successes and needs of polio survivors. Polio flattened me in 1952 when I was 8. After one month of acute care and 14 months of rehabilitation, I returned home to my wife and two children. Four years later I started a new business of selling ceiling surfaces, borne out of my weeks, I suspect, of staring at the faceless ceiling while in my iron lung.

At 63, I am feeling more robust than I did two years ago because I am now using nighttime ventilation. My doctors never expected me to live this long but I have to credit Post-Polio Health International (www.post-polio.org) for its wealth of information and my wife for her support. I will take some credit, because I can imagine nothing that can organize and train the mind better than chronic disability. Much that others do routinely requires thought and planning. I don't have to call ahead to restaurants as much as I used to but I call on the XXXXXXX community to continue its drive towards equal opportunity and accessibility for all of its citizens.

Name
Address
Phone

Sample Letter #3

I had polio in 1954, a year before individuals thought we wouldn't have to worry about getting polio any more because we got the vaccine. That was a long time ago. And yet, people around the world are still contracting polio because there are many countries where too many children have not been inoculated. I know that as long as the polio virus exists anywhere, we are all still at risk. 

This week I join Post-Polio Health International's (www.post-polio.org)  campaign not only to bring support and assistance to the many polio survivors now struggling with post-polio syndrome, but also to do everything possible to encourage eradicating the scourge of polio wherever it exists in the world.  

Name
Address
Phone

Sample Letter #4

People forget. It's been over 50 years since the Salk vaccine wiped acute poliomyelitis off the map in this country, after decades of fear-filled summers. And now, polio is close to being wiped out everywhere.

But WE'RE STILL HERE.

Thousands of people like me contracted polio before the Salk vaccine but still survive - and thrive - in this country. Time has brought post-polio effects to us. Many, like myself, escaped using iron lungs years ago, but now must use a ventilator at night, and even part of the day.

We are extremely fortunate, however, that organizations such as Post-Polio Health International provide us a wealth of information. Ventilator users especially have access to critical information and support from PHI's International Ventilator Users Network. Many Polio survivors and ventilator users are isolated and need help. They need to know about PHI (www.post-polio.org). That's why we're shouting out to our community and the world that WE'RE STILL HERE!

Name
Address
Phone
email

Sample Letter #5

When I finally recovered from polio as a child, fifty years ago, it never occurred to me that years later I would have to face more polio concerns in the form of post-polio syndrome (PPS). This new condition left me frightened and depressed. No one seemed to have answers for me, not even my doctors. Then I located a polio support group that changed my life. I found information that made sense, and I learned I was not alone. 

Post-Polio Health International wants to bring attention to the need for this kind of support and education so that others with PPS can receive the same kind of help I have. Their WE'RE STILL HERE campaign (www.post-polio.org) means hope to disabled people everywhere, in fact, with their efforts to remind us all that there is still much to do and we can all pitch in. Let me volunteer to be one of the first to deliver that message! 

Name
Address
Phone

Sample Letter for SUPPORT GROUPS in the developed world:

WE'RE STILL HERE

More than twenty-three years ago Nebraska Polio Survivors Association (NPSA) began helping polio survivors face the challenges of post-polio syndrome (PPS). Amazingly, the need for our organization still exists, as more and more survivors find themselves confronting PPS. Information and education through our support group meetings, newsletters, and advocacy continue to lighten the load for many.

This week marks the start of Post-Polio Health International's WE'RE STILL HERE Campaign. NPSA joins this effort to locate still more polio survivors, to recruit health professionals, and to create awareness of post-polio issues locally as well as internationally.

As many as 20 million survivors of polio exist worldwide. Committed groups dedicate their work to enhancing the lives and independence of these individuals. Those seeking information in Nebraska should call 402/xxx-xxxx and check the PHI website at www.post-polio.org for an additional in-depth perspective.

Polio survivors support global poliovirus eradication efforts and insist on a quick completion of this task. In countries such as ours, where we haven't had a case of wild virus polio since 1979, we promote the importance of continuing to vaccinate children against this disease. It can only help all of us to remind the public that WE'RE STILL HERE.

Jane Jones
NPSA member
222 Forever Street
Omaha, NE 68222
402-222-2222

FOR SUPPORT GROUPS/ORGANIZATIONS in the developing world:

We are working in a rural and remote area of Southern Pakistan and our goal is to help people with disabilities to speak for ourselves. I am involved with this work because I had polio in 1964 at the age of ten months and am partially paralyzed. Our policymakers and health professionals don't know about polio survivors. They think a person who had polio is affected once. What they don't realize that is there are post-polio effects. We face many barriers- barriers to transportation, to public buildings, to appropriate health care and employment, and barriers to acceptance by society.

This week marks the start of Post-Polio Health International's WE'RE STILL HERE Campaign. We join them (www.post-polio.org) in their efforts on behalf of polio survivors everywhere and ask that polio survivors join us by calling XXX-XXX-XXXX.

Name
Organization
Address
Phone
Website


Difficulty writing 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 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!