FPWR Blog

Tips for Staying Calm and Managing Anxiety During COVID-19 [PODCAST]

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.

Topics: Research

2020 FPWR Conference Speakers — Sneak Preview!

You won’t want to miss these speakers at the 2020 FPWR Family Conference this October in Chicago, Illinois.

Inspiration, hope, people who get it — that’s the 2020 FPWR Family Conference! You don’t want to miss joining like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your child.  

Topics: News

Top 10 Reasons to Attend the 2020 FPWR Family Conference

The FPWR Family Conference takes place October 1-3, in Chicago, IL. Here are the top 10 reasons you need to be there!

10. Chicago!

Nightlife, live music, culture, and great food are all at your convenience! Shop and explore the Millennium Park and the Chicago Riverwalk; go on a tour of the city or visit the nearby zoo for family fun and outdoor recreation. The options are endless!

Topics: News

Top-line Data From DESTINY PWS Study Expected First Half of 2020

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).

Topics: Research

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

 

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. 

Topics: Research

PWS Clinical Trials Alert: February 2020

We have exciting news to share! Soleno therapeutics has successfully enrolled 100 patients into their Phase 3 clinical study of DCCR. We have also fully recruited Dr. Porge's Safe and Sound study.

Several studies are still enrolling patients and 2 additional studies (Pitolisant and CBDV) are expected to open soon. 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. Details on each recruiting study can be found below.

Topics: Research

PWS Research Provides the Hope We Desperately Needed As New Parents

A special contribution by guest blogger Natalie Brenneman

Evan emerged into the world lifeless and blue. I remember watching my husband shifting back and forth on his tiptoes behind the medical team working to resuscitate him. “It’s a boy!” he finally shouted from across the room. Twenty minutes later, our nurse handed Evan to me. “He’s ... I ... he,” I tried to find the words to tell her what she already knew — Evan was struggling for breath. I handed him back, she placed him in an isolette and quickly wheeled him to the NICU. 

Topics: Stories of Hope

First-Ever PWS Genome Project Gets Crowdfunded

A new pilot project will map the genomes of 50 people with PWS and integrate that information with the Global PWS Registry data — with support from donors around the world.

This first-ever PWS Genome Project seeks to help researchers better understand differences in PWS symptoms and severity from person to person as well as issues of safety and efficacy of treatments in each person.

Topics: News

Study Shows Vagus Nerve Stimulation Could Help Treat Behavior in PWS

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.

 

Topics: Research

More reasons than ever to be optimistic of a new FDA approved treatment for PWS

 

We have more reasons than ever to be optimistic of a new FDA approved treatment for PWS in 2020.

Just last week we learned of successful enrollment for the second ongoing pivotal PWS clinical trial (Soleno’s Destiny PWS study), which comes on the heels of Millendo’s Zephyr study reaching its enrollment goal (although its still recruiting PWS children age 4-7). These milestones represent a huge step towards finding new treatments for PWS. Now that these two trials have completed enrollment, it’s just a matter of time before the study is completed and data analyzed. If the data is positive, a new drug application could be submitted to the FDA in 2020!

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