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!

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 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.