Can't stop, won't stop!  That's how we roll!  It is 2022 and we are continuing our campaign to raise critical research dollars for Prader-Willi syndrome (PWS) research, and we need YOUR help!

Evan is 15 and in 9th grade.  We are feeling a bit like experts at how to live this PWS life, but we know it could be better.  We don’t want Evan to just get by…we want him to live his BEST life! 

Last year we were given some disappointing news when the FDA declined a new drug application for Carbetocin, a clinical trial drug Evan has been taking for 3 years.  Soon, another PWS drug will also be considered for approval by the FDA.  These represent the start of what we hope will be a future with a treatment for hyperphagia, the unrelenting food drive that is the hallmark of PWS.  We know we will need an arsenal filled with options to individualize the treatment for the best chance of success.  But more work needs to be done! 

PWS has a constellation of symptoms, some of which are life limiting like severe behavior and temper outbursts that prevent individuals with PWS from living a full life.  That is why we need your help.  With your support, and careful stewardship, your donation dollars have powered past projects like the first-of-its-kind PWS Genome Project looking for variants that explain the characteristics of PWS and possible targets for future treatment and provided the seed money for the initial research supporting the development of the clinical trial drug DCCR for hyperphagia treatment.  In 2022, it will power FPWR's largest project to date using tVNS (transcutaneous Vagus Nerve Stimulator) technology in a multi-center large study aimed at improving behavior and temper outbursts.  This technology has shown promising results in pilot studies and has dramatically improved the lives of the study participants.  Donations will also power other clinical projects aimed at improving daily life, genetic research and development of basic science projects so we can understand what is happing in the body that causes the issues faced by people with PWS and understanding the root cause is the first step to finding a treatment. 

We remain humbled and grateful to all those who have donated in the past and who donate again this year.  Your support of our family and all those with PWS is incredibly generous!  In a time when there are so many causes to support, we are thankful you choose ours!

You can learn more about PWS and the research that is underway at http://www.fpwr.org/.