FPWR Blog

A special contribution by guest blogger Deb Cooper

Deb shared her story via our Stories of Hope questionnaire.

Several NEW PWS trial opportunities are now available. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention (non-drug) or natural history studies, like the PWS Weight Study described below.

Community members from coast to coast are finding easy ways to make supporting PWS research FUN! A 1-mile kids race, a friendly kickball tournament, an uncle's bike ride across America, and an individual Ironman are just four examples of our community rising together to raise critical funds for PWS research while doing what they love!

Paul Golub’s 30^th anniversary working for Walmart in Athens, GA, was just around the corner, when his upper management approached him and asked what he would like to do to celebrate the occasion. After spending some time thinking about it, he remembered something that his brother Larry had suggested about 5 years back — that they should ride their bikes coast to coast someday. 

In 1869, scientists isolated DNA for the first time. In 1953, they identified its double-helix structure. In the late 1970’s bone marrow transplantation was introduced, and entire immune systems (genes) were replaced as means to cure some blood cancers. In 2003, the human genome was sequenced.  FPWR’s own director of research programs, Theresa Strong, worked on that project with Dr. Francis Collins.

One milestone after another has been reached, giving us a deeper understanding into how our bodies and minds are constructed.

The ability to regulate emotions is an essential skill for a happy life, and for many of us this can be challenging to accomplish! When left unmanaged, high levels of stress can lead to both mental and physical ailments which is why learning coping strategies is important for long term health.

I recently had the joy of attending the One SMALL Step walk in Washington, D.C. on June 1, 2019. 

Being that I am involved daily in the One SMALL Step community, often helping in the background with technology, logistics, communications and coaching, one might think that by now I am used to the camaraderie, joy, feeling of acceptance and love that comes from attending a One SMALL Step event.  But with each One SMALL Step event that I attend or host, the feelings never fade or dull, they only grow stronger.

Are you excited about the upcoming FPWR conference this October in New Orleans? We are! And here is just one more reason this year’s conference should not be missed: Dr. Jessica Duis.

FPWR works closely with several clinical trial sponsors in order to help companies understand the medical needs and challenges of PWS, provide input into study protocols and educate the community about trial opportunities. Most recently, FPWR Director of Research Programs, Dr. Theresa Strong, was invited to participate on the Scientific Advisory Board for Saniona, a therapeutic company working on a new treatment for hyperphagia in PWS.  Saniona will leverage the expertise of its Scientific Advisory Board as it develops its Phase 2b and 3 studies of Tesomet which are planned to take place in both the U.S. and Europe over the next 2 years.  Read below for their recent press release.

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2019 totaling $786,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $12,000,000 to research since 2003.