New call-to-action
New call-to-action
New call-to-action

Foundation for Prader-Willi Blog | Parents (3)

Categories

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is caused by mutations in the MAGEL2 gene, a gene that is also deleted or inactivated in Prader-Willi syndrome (PWS). Because SYS is a relatively newly describ...
February 21, 2024 Read More

Topics: Research, Parents, Schaaf-Yang Syndrome

Standards of Care for People with PWS Ages 3-9 [2023 Conference Video]

In this one-hour and 2‑minute video, Dr. Parisa Salehi, a Pediatric Endocrinologist at Seattle Children’s and SCH PWS Clinical Director, discusses standards of care for people with PWS ages 3-9.
January 30, 2024 Read More

Topics: ages: 4-7, Parents, Children 3-6

Analysis of Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Scores

The Hyperphagia Questionnaire for Clinical Trials (HQ-CT) is typically completed by caregivers for individuals with PWS who are enrolled in clinical trials. The questionnaire is designed to evaluate changes inhyperphagia during the course of the tria...
January 10, 2024 Read More

Topics: News, Research, Parents

Standards of Care Ages 10+ [2023 Conference Video]

In this one hour and 25-minute video, Dr. Diane Stafford, Endocrinologist at Stanford University School of Medicine, provides an overview of care for people with PWS over age 10 including medical needs, currently available medications, supplements, l...
December 12, 2023 Read More

Topics: Parents, Adults, Children 12-18

FPWR 2023 Family Conference - Deep Dive Workshops

You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO. This year's conference has something for every parent traveling this PWS journey. Attend interactive workshops designed to provide practical tools an...
July 11, 2023 Read More

Topics: Parents, Adults, Children 0-3, Children 3-6

The Comer Family Is “Eager to Meet You” in Denver This October!

A special contribution by guest blogger Andrew Comer The 2022 FPWR Family Conference in Chicago was an important turning point for our family. Our daughter Lucy had been born only six months prior, and diagnosed with PWS a month after that. My wife S...
June 20, 2023 Read More

Topics: Parents

FPWR 2023 Family Conference - New Parents Welcome!

You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO.
June 6, 2023 Read More

Topics: Parents, Adults, Children 0-3, Advocacy

2022 PWS Research Symposium and Family Conference

This September 29 - October 1, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Fam...
August 6, 2022 Read More

Topics: Research, Parents, Learning

​​Why I’m Crossing the Globe for FPWR’s Annual Conference

A special contribution by guest blogger Will Greene When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to...
August 5, 2022 Read More

Topics: Stories of Hope, Parents

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).

4star120x60

NORD_MembershipLogo_Platinum_2021

excellence-in-giving-logo

Main Menu

Our Mission

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

Contact Us

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

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

Copyright © 2020. All Rights Reserved. Terms of Use. Privacy Policy. Copyright Infringement Policy. Disclosure Statement.