Foundation for Prader-Willi Blog | Research

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2020 totaling $912,251. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $14,000,000 to research since 2003.

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives advice on how to manage behavior challenges related to Prader-Willi syndrome during this stressful time and answers questions from our community members around the world. Download the slides here.

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness, and strabismus, which is when the eyes don’t look in the same direction at the same time (commonly known as ‘cross-eyed’). The frequency of nearsightedness in the Global PWS Registry (41%) is in line with the general population. However, the prevalence of strabismus (40%) is significantly higher than the general population (<5%). Farsightedness is also more prevalent in PWS Registry participants (25%) than in the general population (5-10%).

In addition to our regular clinical trial updates below, we have two clinical trial announcements to share with you. 

1. Millendo has shared that results from the Zephyr clinical trial do not show the significant improvements in hunger that we had all hoped to see and Millendo has discontinued the livoletide program for PWS. Learn more in our blog >>

2. Due to COVID-19, Harmony has delayed the start of their Phase 2 study of Pitolisant in PWS. The company does intend to move forward with the study when physical distancing measures allow. Read Harmony's letter to the community >>

In our latest podcast, Patrice Carroll, Director of PWS Services at Latham Centers in Cape Cod, shares how to how to help our loved ones with PWS through this unusual time of social distancing and isolation due to COVID-19. To listen, just click above.

In our latest podcast, Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares how to identify and treat serious mental health issues in our loved ones with PWS. To listen, just click above, or read our partial transcript below.

In our latest podcast, Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares tips on how to stay calm and manage anxiety during COVID-19. To listen, just click above, or read below for a list of tips to start using today.

Soleno therapeutics recently completed enrollment of their ongoing Phase III Clinical trial, DESTINY PWS, and is expecting to announce top-line data the first half of 2020. The study is evaluating once-daily Diazoxide Choline Controlled-Release (DCCR) tablets for patients with Prader Willi Syndrome (PWS).

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants required a feeding tube in infancy. 

Temper outburst and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Now, a promising study finds that four out of five participants had a reduction in temper outbursts after wearing a activated vagus nerve stimulation device.