Gary and I traveled to Bethesda MD for the FPWR conference. The drive was rough on Ayden Jane but the conference was sooo worth it. We were able to hear from a few of the incredibly intelligent researchers who are on a mission to find answers to the struggles for people with Prader Willi syndrome. Yippeee!!
For those interested in the details, I have to say Ali, over at www.divingintothewaves.com and Susan at www.hedstromfamily.org summarized it really well. I am not going to reinvent the wheel and post my notes. We may get our hands of some slide shows that we saw and I will post those if I figure out how.
The big picture of what we heard is HOPE. If not a cure for PWS, help for the many challenges. Help that may reduce the gnawing hunger. Help for behavior problems. Help for the so very common scoliosis. Help for the hypotonia they all struggle with. Help with the sleep apnea. Help with so many things.... The answers may come soon or may not come for a while, but just to know that someone is working really hard to find the answers and that it is possible that some answers are just around the corner is... well... unbelievably exciting doesn't even cover it. Impossible to put into words the feeling that there is hope to improve the future of your child when so much of their future is out of your control.
Now, if I can just raise a few hundred thousand dollars so they can get to work!
No comments:
Post a Comment