Thank you for visiting our page and supporting Jolie and our family! For the past few years we have participated in the One Small Step Deerfield walk. This is such a wonderful event and fundraiser for our local PWS community. This year, due to Covid the walk will be virtual, however we still want to fund raise and support this event that we have looked forward to each year!
Prader Willi Syndrome is incredibly complex. The list of medical complications is long and to be honest, can be quite scary. The most common and considered hallmark of the condition is known as hyperphagia. Most simply put, at some point in the life of a PWS individual they will develop the inability to feel full - as you can imagine this leads to disabling and life-threatening food behaviors.
Today Jolie is an absolute warrior! She works so hard at absolutely everything. Many things that come easily for other children, balance, speech, coordination (and others) simply take more time and a little extra work on her part. Jolie kicks butt everyday and almost always has a sly little smile on her face while she's doing it. She is an absolute rockstar and the perfect lil princess in our family.
Your donation will make a HUGE difference. For the first time ever there are new PWS drugs/treatments in the final stages of trial/FDA approval. FPWR directly helps to fund these efforts and your donation will can help push these advancements towards the finish line. Today PWS families have real HOPE.
HOPE for treatments.
HOPE for a life lived full.
HOPE for an independent future.
Thank you so much for your support of Jolie and our family - it absolutely means the world to us!