Foundation for Prader-Willi Blog (63)

PWS Clinical Trials Update - Part 1

Over the past 3 years we have seen a number of new companies investing in Prader-Willi Syndrome. This is in part becuase of PWS's orphan indication and the significant unmet medical need, but is also reflective of the steps we have taken as a communi...

January 2, 2017 Read More

Topics: Research

My Child is My Inspiration: If He Can Do It, So Can I

A special contribution by guest blogger Karina O'brien How has your child exceeded your expectations? When we received Noel's diagnosis, we were told he wouldn't be walking before his 5th birthday and would be NG fed until the age of 2. Noel is almos...

December 30, 2016 Read More

Topics: Stories of Hope

Molecular Insights and a New Target for Drug Development in PWS [VIDEO]

Columbia University Medical Center (CUMC) researchers have discovered that a deficiency of the enzyme prohormone covertase (PC1) in the brain may be linked to most of the neuro-hormonal abnormalities in Prader-Willi syndrome (PWS), a genetic conditio...

December 27, 2016 Read More

Topics: Research

I Learned from My Daughter That Life is About Love

A special contribution by guest blogger Chelsea Balumas How has your child exceeded your expectations? Sienna is so strong. She is such a fighter, and she just keeps surprising us with her strides in her development. She was our first child so we don...

December 23, 2016 Read More

Topics: Stories of Hope

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

FPWR Blog

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PWS Clinical Trials Update - Part 1

My Child is My Inspiration: If He Can Do It, So Can I

Molecular Insights and a New Target for Drug Development in PWS [VIDEO]

I Learned from My Daughter That Life is About Love

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

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