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Research Blog

Two Moms Harvest Hope With 5K for PWS Research

While most of us will be relaxing on Thanksgiving Day, watching football or entertaining family, Rachael Fischer and Julie Foge will rise before the sun to host the Harvesting Hope 5K run. 

This will be the third year in a row that these two amazing, determined women will host this family-focused event — which also includes a 1K — to raise funds for PWS research.

Clinical Trial on DCCR As PWS Treatment: Results + Next Phase [VIDEO]

This blog contains excerpts from a presentation on a PWS clinical trial of DCCR, the diazoxide choline controlled release tablet. The presentation was given at the FPWR 2017 conference by Dr...

Mindfulness Based Intervention Shows Promise for Aggression in PWS

One of the most difficult and independence-limiting behaviorial issues for people with PWS is aggression, including temper outbursts and verbal aggression. These behaviors often negatively impact vocational and social opportunities, and yet there have been few successful interventions and studies in this area...

PWS Clinical Trial: GLWL 01 As Potential Hyperphagia Treatment [VIDEO]

This blog contains excerpts from the PWS Clinical Trial GLWL 01 Overview presented Caroline Fortier, CEO of GLWL Research, Inc., at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below.

In case you don't have time to watch the full video, we've captured some of the key points in the notes below. 

PWS Stem Cell Repository to Accelerate Drug Development

FPWR is working to eliminate the challenges of PWS by speeding up development of two types of therapies: Genetic therapies seek to compensate for the lack of expression of the paternally expressed PWS genes on chromosome 15...

Education for Children With PWS — IEPs and More: Tanya Johnson [VIDEO]

This blog contains excerpts from My Journey through the Special Education System, a presentation by FPWR Board Member Tanya Johnson at the FPWR 2017 conference about education for children with PWS, including IEPs and other topics relevant to school-aged children...

FPWR's Clinical Care Program for PWS: Priya Balasubramanian [VIDEO]

This blog contains excerpts from the Clinical Care Program for PWS Overview presented by research team member Priya Balasubramanian at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below.

In case you don't have time to watch the full video, we've captured some of the key points in the notes below.

Priya has a doctoral degree in molecular biology from the University of Southern California...

Taking Charge and Changing the Futures of Our Children With PWS

A special contribution by One Small Step host Lisa Matesevac 

As we embark on hosting our 5th OSS event, our second of 2017, I stop and think how this all got started for our family. Like most families, we are VERY busy. At different times, we are EXTRA busy.

When our son, Evan, was born in 2006 my husband and I had different perspectives on how to manage his future...

Studies Show Benefits Of Growth Hormone Therapy For Adults With PWS

Children with PWS typically have growth hormone deficiency (GHD), and treating them with growth hormone has been shown to have beneficial effects on growth, body composition, motor function, and possibly cognitive development. 

Aaron Dunn and Family: Hugging Our Way to a 'Hopefull' Future

A special contribution by Amanda Dunn, Host of HopeFull: Funding a Cure for Prader-Willi Syndrome, Cincinnati, OH

For our 5-year-old son Aaron, it all starts with a hug.

Not just any hug...