FPWR Blog

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.

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.

A new study, ZEPHYR, is now enrolling patients ages 8 to 65 years to determine the safety and efficacy of livoletide for the treatment of hyperphagia in PWS. A live webinar was conducted on April 16th sharing details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 20 minutes in length, followed by 15 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 below.

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

Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?

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.

A new collaboration between UConn Health and the Foundation for Prader-Willi Research will create a centralized, high quality biobank of stem cells to help researchers better understand Prader-Willi syndrome.

PATH for PWS: Paving the Way for Advances in Treatments and Health

People with PWS are at a greater risk of health complications and serious medical events than individuals in the typical population. Despite our efforts to control for weight related complications, people with PWS continue to have a lower-than average life expectancy. Our goal, through the PATH for PWS study, is to build on our body of knowledge, improve care for individuals with PWS and explore new treatment options. Study participation contributes to the actionable information available to our community. 

Our team recently presented a summary of our 2018 programs and 2019 plans to the FPWR board of directors and, in reflection, 2018 was a great year of progress in PWS research!

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

We’re looking forward to this year’s FPWR Family Conference, and I hope you will join me at two informative sessions with Ashley Waguespack and Jessica Boudreaux, of Sensory Solutions. 

Ashley and Jessica have more than 20 years combined experience to the field of pediatric occupational therapy. They are both certified in sensory integration and have the unique perspective of looking at children from a holistic framework.

Ashley says: In each treatment session, we are assessing and reassessing the whole child and seeing how we are best able to support the child to be successful and achieve their highest potential.