WHAT HAVE WE ACCOMPLISHED FOR OUR MEMBERS?

HOW DO YOUR DUES HELP?

• Information: We are in our 34th year of publication of our outstanding newsletter, The Gathered View, which keeps you updated with the latest information and research related to Prader-Willi syndrome, and access to articles and information on research on our “members only” section of the website. This information is relevant and vital to all individuals with PWS, from newborn through adulthood. Over 6,000 copies are sent electronically in addition to the printed copy.
• Research: Over $475,000 in research projects were approved over the last year with results being reported frequently in The Gathered View and our website. Our Clinical and Scientific Advisory Boards are composed of the leading researchers and clinicians in the field of Prader-Willi syndrome.
• Fiscal Responsibility: PWSA (USA) is one of only 225 charities (less than ¼ of all charities reviewed) to receive the Better Business Bureau’s Charity Seal, recognizing us as a responsible, well-run charity.
• Increased Awareness: In cooperation with the Foundation for Prader-Willi Research, a PWS-specific research proposal finished 16th out of 1,190 proposals in the American Express Members Project. This effort continues to raise awareness and contributions.
• Emergency Medical Assistance: Establishment and continued maintenance of a crisis hotline, which is available 24 hours a day, 7 days a week, to assist families with medical emergencies.
• Legislative Advocacy: The PWS network turned back threatened U.S. Senate passage of a bill to restrict access to human growth hormone by speaking before the Social Security Administration regarding its process for disability determination. This enabled our crisis counselors to prepare effective materials for our families to use as they navigate the process to obtain SSI benefits for their loved ones.
• Education and Support: We provide telephone assistance and printed materials to physicians and teachers. The Package of Hope is distributed free of charge to newly-diagnosed families. Our crisis counselors handled over 1,400 calls from PWS families last year alone and the number increases every year.
• Website and Electronic Support Groups: Our website has an average of 63,098 visits a month! We also have almost 1,500 participants on our various electronic support groups, which encourages communication and a sense of family among all who participate.
  
  

Did you know? 
As a member of PWSA (USA), you are able to add on individuals to your membership at a cost of only $15 each. These people will be considered auxiliary members and will receive the Gathered View and get a discount on any materials they order. This ensures that the people in your network receive the most recent information and support. This could include grandparents, teachers, neighbors, clergy, babysitters, service providers or anyone who has a need for more information.

You, not the auxiliary member, will receive the renewal notice and will be responsible for payment. If you would like to add auxiliary members, just fill out the Auxiliary Member Registration section on your membership form or use the space below and return with your payment or contact the national office at: 800-926-4797 or 941-312-0400

THE LARGER OUR NUMBERS ~ THE LOUDER OUR VOICE

WON’T YOU RENEW YOUR MEMBERSHIP TODAY? 

JOIN IN AND HELP MAKE A DIFFERENCE!

Join online!  Click here

GET MEMBERSHIP APPLICATION FOR PWSA (USA)

To download Adobe Acrobat Reader, simply click on the "Get Acrobat Reader" icon below, complete your download, and come back for your membership application.

Send or call with your membership information to:

PRADER-WILLI SYNDROME ASSOCIATION (USA)
8588 Potter Park Drive, Suite 500
Sarasota, Florida 34238
1-800-926-4797

Edited 03/03/2010