Mission Statement
Founded in 1990, the mission of the North Central Florida Post-Polio Support Group is to inform and educate polio survivors, families, friends, physicians, therapists and suppliers about post-polio syndrome (PPS). We are a not-for-profit support group reaching out to well over 800 survivors of polio within a 100-mile radius of Ocala, Florida, and to hundreds of additional survivors throughout the world.
About our Support Group
The North Central Florida Post-Polio Support Group was established by Carolyn & Jerry Raville, both polio survivors, so they could learn as much as possible about polio and post-polio syndrome and share that information with others seeking help. Carolyn had previously formed a support group in Miami when, as her mentor, Gini Laura, advised her to rely on professionals as resource persons and polio survivors as leaders. Our information is designed to help educate physicians and/or health care professionals, if they do not already understand PPS. Our articles are designed to help survivors improve their ways of life, show them how to deal with a mate, relative or friend with PPS, and more. No fees or dues are required of our members, though donations make our work, our newsletter and our website possible and are certainly appreciated. Our support comes from contributions from our members, families, friends, the March of Dimes and the medical community. Our "staff" is strictly volunteer, and all funds are carefully accounted for, so every penny of each donations is wisely used.
We are pleased that we have a knowledgeable network of stable and very talented physicians, therapists and suppliers in our area who are eager to work with us; we have a very fluid exchange of ideas with them and with other physicians, therapists and researchers from all over the North American continent as well as post-polio support groups around the world. In addition, we have an excellent relationship with the University of Florida in Gainesville and are often involved in research studies and polio/postpolio labs and help in the education of the University's Senior Physical Therapy students each fall. Each year we find ourselves even more excited and very proud of another graduating class of University of Florida therapists.
We also share a wonderful working relationship with the March of Dimes, North Central Florida Chapter, that continues in the great tradition established in the days of President Franklin Delano Roosevelt. We are pleased to support the March of Dimes' efforts in "Saving Babies, Together", by offering them our aid whenever and wherever possible, and we find they have not forgotten the victims of polio and the problems they face today with post-polio syndrome and vaccine-related polio.
About Our Programs
The programs (meetings) of the North Central Florida Post-Polio Support Group take place six times a year at the Collins Health Resource Center on the second Sunday of the month at 2:00 PM, unless otherwise stated. Anyone and everyone, polio survivor or not, is welcome to attend any of our programs. We also present workshops, seminars and resource fairs, plus we have a "summer vacation" during the hottest part of the Florida summer (July and August). Our newsletter, however, will continue to come out every other month right on schedule.
The length of the programs are usually about two hours with a speaker who is expert in some area of the medical, health care, health service, equipment supply or legal community. Questions from the floor are considered an important part of the program and are encouraged. We keep the programs as informal as our dress (being comfortable is important, so dress is casual, much the same as you might wear shopping). We try to be informative, and we are serious about our goals, but we also like to have a few good laughs. In fact, we consider the ability to laugh as important as any prescription a physician can write.
While we strive to improve our physical and metal well-being and promote understanding to those around us, our ultimate goal is that no other child or adult should ever have to experience the ravages of polio and, ultimately, post-polio syndrome. A big step in that direction was made when the Centers for Disease Control and Prevention asked physicians in the United States (as of January 1, 2000) to cease using the live oral vaccine (OPV) in favor of the safer Salk (dead) vaccine (IPV) unless special individual circumstances warrant it. Information on the current vaccine recommendations are available on this site in the PDF format.
About our Newsletter
The most valuable tool in our mission of informing and educating is our newsletter, the POLIO POST NEWS, presented in American English, but frequently translated into other languages by some of our members across the world. The ten to twelve page hardcopy newsletter is now published six times a year and comes out approximately two weeks before the next scheduled program. (Residents in the USA, Canada or Mexico can click here to download a subscription form in the PDF format.)
If you live OUTSIDE the USA, Canada or Mexico, you may subscribe to the POLIO POST NEWS via our email link. We cannot emphasize enough the importance of being careful to include your CORRECT email address. Sadly, there have been requests we could not honor simply because the address was not correct and all our efforts to second guess failed. If you have requested a newsletter and have not recieved it, that could be the problem. Please get in touch with us so we can correct the error.
North Central Florida Post-Polio Support Group
with our thanks to Shoji Nakagane
for all his caring work
Copyright © 2010 (North Central Florida Post Polio Support Group) All Rights Reserved
Reproduction whole or in part without permission is prohibited
July/August, 2010
COMING PROGRAMS
August 28, 2010 (Saturday at 10:30am): "What Is Post-Polio Syndrome?"
Carolyn & Jerry Raville present this 29-minute video twice a year. The more this video is shown, the more people we seem to find to need to see it. "What Is Post-Polio Syndrome?" explains... in layman's terms... exactly what polio and post-polio syndrome are... it explains that there is no reason to be scared of the new problems that arise in the onset of PPS... the reason for having a good evaluation performed by qualified physicians knowledgeable in polio and PPS... how to manage your PPS... and it explains (as you find during the meeting) that there ARE people who share your problem and who will share ideas and offer help.
As always, there will be a Question & Answer session after the video. And, please... DO NOT think that your question isn't important enough or may seem silly to you. ALL of your questions ARE important and there is nothing silly about any questions you have. This video has been the second step on the road to getting the help you want and need. (The first step was that you realized you needed help and came to the program!)
Anyone who wishes to attend is welcome. You do not have to be a survivor to take part. We have many family members and friends of survivors, too. All we ask is that you RSVP to Carolyn Raville by August 26th (352-489-1731). We hope you can attend.
September: (To Be Announced)
SUMMER VACATION CONTINUES!!
This is that time of the year when our support group lays low and avoids the hot Florida summers, recharges our batteries (mobility devices AND us!), catches up on work-that-needs-to-be-done-but-we-never-quite-got-around-to-it, and extending our plan for the coming year of 2011.
