Foundation for Prader-Willi Blog (48)

Talkowski Team Uses CRISPR to Understand Role of Genes Lost In PWS

Although the "PWS region" on chromosome 15 is well defined, it's still unclear how loss of this set of genes leads to the symptoms of Prader-Willi syndrome. Typically, there are several genes in the PWS region that are lost or inactivated in people w...

November 27, 2017 Read More

Topics: Research

FPWR Gives Thanks – To All Who Give Us Hope for the Future!

This Thanksgiving, the FPWR team is thankful for: The amazing group of dedicated researchers and clinicians around the world working to tackle the hard problems of PWS. From defining new clinical trial endpoints to helping parents improve how we care...

November 23, 2017 Read More

Topics: News

PWS Registry Data: 91% Have Used Growth Hormone for PWS [INFOGRAPHIC]

The Global PWS Registry, launched in May of 2015, now has more than 1,000 registered participants diagnosed with PWS, Schaaf-Yang syndrome and USP-7 mutations. This blog shares some highlights of the data collected via the registry to date. Global PW...

November 20, 2017 Read More

Topics: Research

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

Update: DCCR is currently enrolling for its Phase 3 study. Information on this study can be found here. This blog contains excerpts from a presentation on a PWS clinical trial of DCCR, the diazoxide choline controlled release tablet. The presentation...

November 15, 2017 Read More

Topics: Research

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...

November 13, 2017 Read More

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...

November 10, 2017 Read More

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 ...

November 9, 2017 Read More

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) ...

November 1, 2017 Read More

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 ...

October 31, 2017 Read More

Topics: Research

FPWR Blog

Categories

Talkowski Team Uses CRISPR to Understand Role of Genes Lost In PWS

FPWR Gives Thanks – To All Who Give Us Hope for the Future!

PWS Registry Data: 91% Have Used Growth Hormone for PWS [INFOGRAPHIC]

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

Mindfulness Based Intervention Shows Promise for Aggression in PWS

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

PWS Stem Cell Repository to Accelerate Drug Development

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

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

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