Research Blog

More reasons than ever to be optimistic of a new FDA approved treatment for PWS
More reasons than ever to be optimistic of a new FDA approved treatment for PWS
  We have more reasons than ever to be optimistic of a new FDA approved treatment for PWS in 2020. Just last week we learned of successful enrollment for the second ongoing pivotal PWS clinical trial (Soleno’s Destiny PWS study), which comes on the heels of Millendo’s Zephyr study reaching its...
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Source: FPWR Blog | Published: January 1 2020 - 10:57 AM
Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]
Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]
In this 45-minute video, Sarah Peden, Director of One Small Step and FPWR's Community Development Director highlights the success of the PWS community in raising funds for PWS research. Sarah and parents of children with PWS share how they've gotten involved in supporting PWS research, generating...
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Source: FPWR Blog | Published: January 1 2020 - 10:25 AM
Soleno Therapeutics Completes Target Enrollment in Ongoing DESTINY PWS Phase III Trial of DCCR in Prader Willi Syndrome
Soleno Therapeutics Completes Target Enrollment in Ongoing DESTINY PWS Phase III Trial of DCCR in Prader Willi Syndrome
Soleno Therapeutics has announced that it has completed their target enrollment for their ongoing Phase 3 trial of DCCR for the treatment of PWS. Approximately 100 people with PWS have enrolled in the study. Enrollment of patients was from 27 sites in the U.S. and the UK.  No serious, unexpected...
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Source: FPWR Blog | Published: January 1 2020 - 09:24 AM
IMPACT 2019
IMPACT 2019
In 2019, more than 11,000 donors supported PWS research and our mission to eliminate the challenges of PWS. We would like to thank all of our supporters: everything we do is made possible by you! Here are just a few of our accomplishments from this past year.
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Source: FPWR Blog | Published: January 1 2020 - 07:38 AM
Self-Care for PWS Caregivers — Elisabeth Dykens [2019 CONFERENCE VIDEO]
Self-Care for PWS Caregivers — Elisabeth Dykens [2019 CONFERENCE VIDEO]
In this 41-minute video, Dr. Elisabeth Dykens presents on the results of stress and the importance of self-care when parenting a child with special needs. Dr. Dykens is Professor of Psychology and Human Development at Vanderbilt Unversity and has done extensive research to understand PWS behaviors...
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Source: FPWR Blog | Published: December 12 2019 - 06:14 AM