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Foundation for Prader-Willi Blog | Family Conference (5)

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Pitolisant for Excessive Daytime Sleepiness in PWS [2020 CONFERENCE VIDEO]

In this 30‑minute video, Albena Patroneva from Harmony Biosciences explains what pitolisant is and how it works, and describes Harmony's Phase 2 clinical trial of pitolisant in patients with PWS. The session includes Q&A from participants in the ...
June 15, 2021 Read More

Topics: Research, Clinical Trials, Family Conference

Optimal Nutrition for People With PWS [2020 CONFERENCE VIDEO]

In this 60‑minute workshop, Melanie Silverman explains optimal nutrition for children and adults with Prader‑Willi Syndrome. She includes online resources and gives tips on how to handle feeding times and varying diets. The session includes Q&A f...
May 17, 2021 Read More

Topics: Research, Family Conference

Orthopedic Challenges in Prader‑Willi Syndrome [2020 CONFERENCE VIDEO]

In this 60‑minute workshop, Dr. Van Bosse discusses the diagnosis and treatment of orthopedic challenges in PWS and how in his practice of pediatric orthopedic surgery since 1994, he has helped hundreds of patients with PWS. The session includes Q&am...
May 3, 2021 Read More

Topics: Research, Family Conference

Social Skills and Cognition Challenges in PWS  [2020 CONFERENCE VIDEO]

In this 75-minute presentation, experts Elizabeth Roof, Anastasia Dimitropoulos, Louise Gallagher, and Lauren Schwartz-Roth discuss what we've learned about social skills and Prader-Willi syndrome. In particular, they discuss what we can do to addres...
March 18, 2021 Read More

Topics: Research, Family Conference

Moving Barriers for Improved Behavior in PWS [2020 CONFERENCE VIDEO]

In this 60‑minute video, Patrice Carroll, director of PWS services at Latham Centers in Massachusetts, describes what typical PWS behavior is, ways it can be improved, and how to remove barriers to allow children and adults with PWS to thrive and ach...
February 24, 2021 Read More

Topics: Family Conference

Navigating Your Insurance Coverage with PWS [2020 CONFERENCE VIDEO]

Brian Kalasek is both a father of a young son with PWS and VP of Special Risk for Mutual of Omaha insurance company. In this 76-minute presentation, he shares successful strategies for maximizing health insurance benefits and estate planning — inform...
February 22, 2021 Read More

Topics: Family Conference

Deconstructing Anxiety in PWS [2020 CONFERENCE VIDEO]

In this 88‑minute video, Dr. Deepan Singh discusses what anxiety looks like in PWS, what leads to it, and how can it be treated. Learn from this PWS mental health presentation, which concludes with Dr. Singh answering questions from the audience at t...
February 10, 2021 Read More

Topics: Research, Family Conference

Take Action for PWS Research Fundraising Panel [2020 CONFERENCE VIDEO]

If you value PWS research and want to help find treatments for PWS, join us for a panel of parents and hear how they've taken action in their own unique ways. In this 50‑minute video, active PWS parents and fundraisers talk about how they've gotten c...
January 7, 2021 Read More

Topics: Family Conference

Return of Results: Destiny-PWS by Soleno Therapeutics [2020 CONFERENCE VIDEO]

In this hour-long video, the CEO of Soleno Therapeutics and researcher Dr. Jennifer Miller go into detail on the design and results of the DCCR phase 3 clinical trial. The session also covers next steps for making the drug available to treat PWS, dis...
December 28, 2020 Read More

Topics: Research, Family Conference

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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