FPWR Blog

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.

A new study is now enrolling people with PWS ages 13 to 30 years old and their caregivers to participate in a study to evaluate the use of Mindfulness-based intervention for the treatment of temper outbursts. A live webinar was conducted May 6th which shared details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 15 minutes in length, followed by 10 minutes of Q&A. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript and slides from the presentation below.

Details on this study and a list of trial locations can be found on our clinical trial directory.   

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.

Visit our PWS Awareness month page on the FPWR website for inspiration, educational resources and fundraising ideas to help you with your awareness activities! And don't forget to sign up for our PWS Awareness Month emails to receive a daily PWS fact that you can share to help build awareness.

The PWS-Clinical Trial Consortium (PWS-CTC) met with FDA on November 19th for a 90-min session, to discuss the progress made in the last three years to overcome clinical trial challenges in PWS. With an increasing number of clinical trials in PWS, it is a critical time for the FDA and industry partners to fully understand the unmet medical needs and the impact that PWS has on those with the disorder and their families.

We cannot wait for this year’s FPWR family conference, and what would an FPWR conference be without research!

Gillian Segall is an 18-year-old high school senior from Chicago, IL who happens to have PWS. We asked Gillian to tell us a bit about her life as a high school senior and her plans for afterward. 

Graduating from high school is something that many kids and their parents take for granted. But I’m a kid with Prader-Willi Syndrome so my journey has been full of ups and downs. The “ups” have been amazing: I will be graduating in May, made my high school honor society, was named a “True Giant” for making my school a better place, and also qualified for state Special Olympics in swimming. But the “downs” have made it really hard to get here.