PWS Awareness 2019

Thank you for visiting our page! Our sweet Siena was diagnosed with Prader-Willi Syndrome on March 10, 2011, two days before her first birthday, and at the time, it was earth-shattering. Although we finally had an answer we had searched for since she was born, we felt lost and alone. Thankfully, in November 2011, we were blessed to find our TRIBE and that was within the other PWS Families we met through the Foundation for Prader-Willi Research.

Since Siena was diagnosed there have been TREMENDOUS efforts made for the treatment of PWS, but we still do not have a cure. There may never be a cure, but WE HAVE HOPE that Siena will be able to live an independent life, FULL of happiness and her every dream. While we would never want to change all of the amazing and RARE qualities that make Siena..well, Siena… we WILL do anything to help eliminate the challenges she faces today and the days that lie ahead.

Over the past 8 years we have supported FPWR and their research efforts to ensure that the most important scientific research is funded to find treatments for the many complications of PWS. Today there are many drugs in clinical trials that have the potential to change Siena’s future and possibly afford her that independent life that we dream of for her.

In honor of Prader-Willi Awareness Month, Siena and all of her friends, we’ll be giving to FPWR. We are making a BIG ASK for anyone who would like to donate, to shoot for a minimum of $15 BY May 15th in recognition of 15th Chromosome. YOUR DONATION WILL will be matched up to $50,000 UNTIL MAY 15th, so you can double your impact!


Because of ALL of YOU, Siena has the confidence… the strength… the determination… to defy PWS. BECAUSE SHE WILL NOT GIVE UP, SHE WILL MOVE MOUNTAINS. And as always, THANK YOU, THANK YOU, THANK YOU for your love & support, it truly does take a village. xo

#livelifefull #takethatpws #cantstopwontstop #sienaeve



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