Foundation for Prader-Willi Blog

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned 23), K...

July 10, 2024 Read More

Topics: Stories of Hope, Parents

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Since first tapping into our community 12 years ago, Katie and Adam Larson have been ready to do whatever it takes to find treatments and a brighter future for their son, Graham. From co-hosting One SMALL Step walks to throwing memorable Live Life FU...

June 25, 2024 Read More

Topics: Stories of Hope, Parents

Understand Drug Development for Rare Diseases: Free Online Series

Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational seri...

June 18, 2024 Read More

Topics: Parents, Learning

Early School Years — Ages 3-8 [2023 Conference Video]

In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS.

June 5, 2024 Read More

Topics: ages: 4-7, Parents, Children 3-6, Children 6-12

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the PW...

May 27, 2024 Read More

Topics: Resource Development, Research, Parents

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, SYS

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

Foundation for Prader-Willi Blog | Parents

Categories

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Understand Drug Development for Rare Diseases: Free Online Series

Early School Years — Ages 3-8 [2023 Conference Video]

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

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

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

Standards of Care Ages 10+ [2023 Conference Video]

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