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FPWR Blog

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‘Most exceptional human being that I know’: Mom Inspired by Son with PWS

A special contribution by guest blogger Rebecca Krylow. Rebecca shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Joey is truly the most exceptional human being that I know. He is kind; considerate...
May 4, 2022 Read More

Topics: Stories of Hope

FPWR Announces 1st Round of 2022 Grants of Over $1M in Funding [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2022 totaling $1,137,148. Our largest single round of funding in FPWR history, FPWR is excited to fund a robust group of 10 grants that encompass projects that w...
May 3, 2022 Read More

Topics: Research

A Photo of Your Loved One May Help Another Family Receive a Diagnosis

Rare genetic disorders can often be challenging to diagnose, resulting in a long diagnostic odyssey. New research aims to shorten the time it takes to get a diagnosis by utilizing artificial intelligence to analyze facial features. Photos of individu...
April 29, 2022 Read More

Topics: Research

Feeding Techniques for Children Ages 0-2 [2021 CONFERENCE VIDEO]

In this 59‑minute video, Sara Parker, MA, a pediatric speech pathologist, discusses feeding techniques for children with Prader‑Willi syndrome ages 0‑2. The session includes Q&A from participants in the 2021 FPWR Virtual Conference. Click below t...
April 26, 2022 Read More

Topics: Research

Ghrelin drug shows no impact on hyperphagia in PWS in a clinical trial

Ghrelin is a small hormone produced in the stomach that stimulates increased appetite. Although it mediates other important effects, such as growth hormone release and a better ability to cope with stress, its direct impact on appetite led to it bein...
April 25, 2022 Read More

Topics: Research

Schaaf-Yang Syndrome Heroes Say, 'You Can Do Hard Things!'

A special contribution by guest blogger Leslie Born “No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins These words ring so true that some days I can’...
April 19, 2022 Read More

Topics: Stories of Hope, SYS

DCCR Clinical Trial Update [2021 CONFERENCE VIDEO]

In this one hour and 3‑minute video, several investigators discuss a Phase 3 Clinical Trial of DCCR, a controlled release tablet of diazoxide choline, run by Soleno Therapeutics. The session includes Q&A from participants in the 2021 FPWR Virtual...
April 18, 2022 Read More

Topics: Research

Partnering for a Successful IEP [2021 CONFERENCE VIDEO]

In this 1 hour and 12‑minute video, Dr. Katy Chambers, former high school principal, teacher, and mom to Daniel who lives with PWS, shares her journey maneuvering the special educational system from both sides of the table. The session includes Q&...
April 1, 2022 Read More

Topics: Research

Early Investments Lead to 3 New Potential Drug Treatments for PWS

To ensure that new treatments for PWS are advanced as quickly as possible, FPWR collaborates with academic researchers, pharma companies, and other stakeholders to speed the drug development timeline and get treatments into the hands of patients fast...
March 23, 2022 Read More

Topics: Research

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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