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FPWR Blog

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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

Your Child Can Do Anything! Don't Limit Them

A special contribution by guest blogger Jennifer Hannabass Jennifer shared her story via our Stories of Hope questionnaire.
November 25, 2016 Read More

Topics: Stories of Hope

It's Not Normal, It's Better: A Letter to Prader-Willi Siblings

A special contribution by guest blogger Courtney Smith A letter to Prader-Willi siblings: Recently, a woman asked if I would be willing to speak with her teenage daughter, who was struggling with having a brother with Prader-Willi Syndrome. Of course...
November 23, 2016 Read More

Topics: Stories of Hope

Improving Social Functioning in PWS [VIDEO]

“People with PWS have a real need to actually connect with others and have relationships." This was one of the many valuable insights shared by Elizabeth Roof, Senior Research Specialist at Vanderbilt University, and other panelists addressing social...
November 21, 2016 Read More

Topics: Research

Parents of Children With Special Needs: We're Unstoppable!

A special contribution by guest blogger Rosemarie Rouse Rosemarie shared her story via our Stories of Hope questionnaire.
November 17, 2016 Read More

Topics: Stories of Hope

She's Shown Us Our Own Strength, Determination, Love and Acceptance

A special contribution by guest blogger Anne Fricke When Freya was little, her parents weren’t sure what her future would hold. At two and a half, she was still not walking well, and every milestone felt like a mountain to climb. Today, at almost fiv...
November 10, 2016 Read More

Topics: Stories of Hope

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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