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FPWR Blog

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 hav...

Topics: Research

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...

Topics: Research

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. Pharmaceutical therapies ...

Topics: Research

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 (individualized education programs) ...

Topics: Research

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 ...

Topics: Research

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 One SMALL Step event, 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. ...

Topics: Stories of Hope

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.

Topics: Research

FPWR Five-Year Research Plan: Dr. Nathalie Kayadjanian [VIDEO]

This blog contains excerpts from the FPWR Five-Year Research Plan Overview presented by research team member Nathalie Kayadjanian at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below. In case you do...

Topics: Research

Improving Social Skills In PWS: Elizabeth Roof [VIDEO]

This blog contains excerpts from Improving Social Skills In PWS, a presentation given by Elizabeth Roof at the FPWR 2017 conference. Her presentation of just over an hour covered two main topics: the behavioral phenotype of PWS and an online social s...

Topics: Research