Foundation for Prader-Willi Blog (64)

PWS Grants & Discoveries, Message to FDA on Drug Development [Webinar]

On December 14, FPWR gave its quarterly webinar reporting on our PWS grants, and on recent research discoveries. In the webinar, which you can watch below, I recapped a recent meeting at the FDA, shared information on the new grants we've funded, and...

December 21, 2016 Read More

Topics: Research

You Can Help FPWR Better Understand Mental Wellness in PWS

We know that mental health is a critical part of quality of life for all individuals with PWS, and something every family wants to improve for their loved one with PWS. Two exciting projects below offer opportunities to contribute to PWS mental welll...

December 19, 2016 Read More

Topics: Research

Look for What is Good, Not What is Wrong

A special contribution by guest blogger Jeanne Huffman Jeanne shared her story via our Stories of Hope questionnaire.

December 16, 2016 Read More

Topics: Stories of Hope

Announcing our Second Round of PWS Research Grants from 2016!

The Foundation for Prader-Willi Research (FPWR), in collaboration with FPWR-Canada and FPWR-UK, is thrilled to announce our second round of PWS research recipients for 2016! Eight outstanding projects were selected for funding, totaling $746,200 in s...

December 12, 2016 Read More

Topics: Research

My Son Is More Than PWS: He Is A Miracle

A special contribution by guest blogger Heather Osterman How has your child exceeded your expectations? When Max was born, our diagnosis was missed. We just lived with trying to help Max with his challenges, not really understanding what was happenin...

December 9, 2016 Read More

Topics: Stories of Hope

Language Delays and Success in the Classroom: Presentation by Ellen Brigger, M.Ed [VIDEO]

Many children with PWS are affected by early language delays. If those delays aren't addressed, the affects can be far-reaching, not just in school, but beyond. Research on these delays shows a number of therapies to be very effective, but it isn't r...

December 7, 2016 Read More

Topics: Research

Believe in Yourself and Believe in Your Child

A special contribution by guest blogger Lisa Miller What would you say to a parent whose child has recently been diagnosed with PWS? Our son is 5 now, but I remember the dark diagnosis days so well. The first year is the hardest, but it gets easier. ...

December 2, 2016 Read More

Topics: Stories of Hope

Can Brain Stimulation Devices Modify Behavior or Hyperphagia in PWS?

Many of the symptoms of PWS, including hyperphagia and behavior issues, likely originate in atypical structure and/or function of neurons in the brain. This presents an additional challenge to designing drug therapies for PWS, because drugs targeted ...

December 1, 2016 Read More

Topics: Research

Zafgen Donates Hyperphagia Questionnaire to FPWR for Use in Clinical Trials

Zafgen, Inc., has donated its Hyperphagia Questionnaire for Clinical Trials (HQ-CT) instrument to FPWR to help enable the development of potential therapies for Prader-Willi syndrome. The HQ-CT is derived from a well-established, caregiver-reported q...

November 30, 2016 Read More

Topics: News

FPWR Blog

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PWS Grants & Discoveries, Message to FDA on Drug Development [Webinar]

You Can Help FPWR Better Understand Mental Wellness in PWS

Look for What is Good, Not What is Wrong

Announcing our Second Round of PWS Research Grants from 2016!

My Son Is More Than PWS: He Is A Miracle

Language Delays and Success in the Classroom: Presentation by Ellen Brigger, M.Ed [VIDEO]

Believe in Yourself and Believe in Your Child

Can Brain Stimulation Devices Modify Behavior or Hyperphagia in PWS?

Zafgen Donates Hyperphagia Questionnaire to FPWR for Use in Clinical Trials

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