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FPWR Blog

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Your Child Will Be Your Hero

A special contribution by guest blogger Lindsey Larson Elliot earned the nickname “hero” before he was even born. I was 20 weeks along with our triplets, and I had noticed our only boy (Elliot), hadn’t moved in quite some time. Concerned, I called my...
March 2, 2021 Read More

Topics: Stories of Hope

Tonix Pharmaceuticals Licenses Technology for Treating Prader-Willi Syndrome

Tonix Pharmaceuticals has licensed technology using oxytocin-based therapeutics from the French National Institute of Health and Medical Research (INSERM) to treat Prader-Willi Syndrome. The co-exclusive license allows Tonix to expand its development...
February 26, 2021 Read More

Why I Will Always Celebrate the Beauty of My Son’s Rare Disease

The last day of February is Rare Disease Day. This special guest blog by Rebecca was originally published on Rare Disease Day in 2016, and we're republishing to share with you this year. If you're inspired by her story, please consider making a donat...
February 26, 2021 Read More

Topics: Stories of Hope

Soleno Therapeutics and Vanderbilt University Announce Collaboration to Develop New K(ATP) Channel Activators

Soleno Therapeutics and Vanderbilt University announce a new collaboration which aims to discover and develop novel KATP channel activators with the potential to treat rare diseases. Soleno’s lead product candidate, DCCR, is a potent activator of KAT...
February 24, 2021 Read More

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: Research

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: Research

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

Paving the Way for Treatments for PWS

In the last 5 years, more than 15 human clinical trials have taken place evaluating possible treatments for PWS. FPWR has been closely involved in each and every one: contributing the patient perspective to aspects of study design, funding or helping...
January 26, 2021 Read More

Topics: Research

IMPACT 2020

In 2020, more than 9,500 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 pa...
January 19, 2021 Read More

Topics: Research

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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Our Mission

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

Contact Us

Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

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