Still Hungry for a Cure

Imagine always being hungry.  Your genetic makeup relentlessly drives you to eat.  No amount of willpower helps you overcome your hunger.  That is the world our friends’ son, our children’s  friend, lives in.  Alex is 10 years old and has Prader-Willi Syndrome.

Alex is a wonderful boy who has a full life. With lots of work and constant supervision, Alex remains thin despite being driven to eat. No small effort. Alex knows he has PWS, but not what his life could be like. He has friends, but some kids tease him. He's in the fourth grade in public school, but works at a different pace than his class. He participates in sports, but activities are more challenging for him than for his peers. Every day, he continues to put in the incredibly hard work it takes to accomplish what comes easily to others his age. He remains a cute, delightful, naive child who is full of life.

I've been training to run my first half marathon, the Indianapolis Monumental Half-Marathon on November 7, 2009, and have decided to take this opportunity to raise awareness of Prader-Willi Syndrome and let you know how you can help. 

It's not easy to live with a rare, life-threatening syndrome with complex medical, cognitive and behavioral challenges. The hallmark symptom of PWS is a constant feeling of being hungry even after eating. It's a feeling so unrelenting that some people don't think it could be real, think it's made up, or just as bad, think it can be controlled by will power alone. What they don't realize is that Alex is genetically hardwired to live in a constant state of hunger that drives his every action. It would be pretty neat if we could decrease the daily struggles in Alex's life. 

PWSA(USA) is the national organization that promotes and funds research, provides education, and offers support the quality of life of those affected with Prader-Willi Syndrome.

Are you wondering how supporting Prader-Willi Syndrome Association (USA) will help Alex directly? PWSA(USA), a non-profit organization, is the leading organization supporting Americans with PWS. PWSA(USA) provides free counseling and educational materials, funds research that has direct application to daily situations, connects affected families with medical and behavioral experts on the syndrome, and much more. PWSA(USA) makes Alex and those around him more knowledgeable and stronger and allows those who care for him to be better prepared. We all want Alex to be happy, successful, and as healthy as he can be.

Help me help Alex by making a tax-deductible donation to PWSA(USA).
Consider a $1, $5, or even $10 donation per mile and I will run the whole 13.1 miles. Donating through this website is simple, fast, totally secure, and the easiest way to support my fundraising efforts.

You can ask your employer to match your donation so that your donation will go farther. Contact PWSA(USA) for help to complete the simple paperwork.

I know it's a tough year financially for many of us and I'm grateful for as large a donation as you are able to give. Many thanks for your support!

Please don't forget to forward this page to anyone who you think might want to donate too!

To learn more about Prader-Willi Syndrome, visit www.pwsausa.org.

As always thanks for your friendship and support.

Best,

Jim Hurst