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Levo Therapeutics Receives Fast Track Designation From FDA for Intranasal Carbetocin for the Treatment of Prader-Willi Syndrome

Levo Therapeutics has received a Fast Track designation from the FDA for intranasal carbetocin for the treatment of PWS. A Fast Track designation will expedite the review of carbetocin so that, if shown to be effective, the product will get to market faster. This is very important for PWS as currently there are no treatments for many of the most challenging symptoms of PWS, such as hyperphagia.

IEPs and PWS — Advocating for Your Child  [2019 CONFERENCE VIDEO]

In this 51-minute video, Dr. Katy Chambers helps understand the IEP (Individualized Education Plan) process and succeed in the IEP journey. Katy Chambers is a school principal of nine years and mom to Daniel (age 7), who lives with PWS...

How a Modified Atkins Diet for PWS Changes the Microbiome  [2019 CONFERENCE VIDEO]

Have you ever wondered what is the optimal diet for a person with PWS? We may not be able to answer that question just yet, but in this 29-minute video, Dr. Anne Scheimann from Johns Hopkins shares preliminary data from her study on the Modified Atkins Diet (MAD) for PWS and on important changes it may have in the microbiome. They review diet strategies for PWS, go over the specifics of the MAD study, and share results related to weight changes and the microbiome...

Standards of Care for Adults and Children With PWS  [2019 CONFERENCE VIDEO]

Whether you are new to PWS or a veteran, its important to stay current on standards of care. In this 57-minute video, Dr. Jessica Duis describes standards of care for both children and adults with PWS, covering topics such as supplements, oxytocin, constipation and gastroparesis, hormone replacement and growth hormone therapy. Click below to watch the video...

November 15th Is International 15q Day

Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes.

Genetic Therapy and PWS — Researcher Fireside Chat  [2019 CONFERENCE VIDEO]

Gene therapies have the potential to provide transformative treatments in PWS but much is still unknown in regards to the feasibility of a successful treatment. In this 53-minute video, Drs. Stormy Chamberlain and Jim Resnick give a brief overview of PWS genetics, describe the current landscape of PWS genetic therapy, and discuss the feasibility of this therapy. This is followed by questions from the audience. Click below to watch the video...

Millendo Announces Successful Recruitment of Phase 2b Study of Livoletide

Millendo announced today they have successfully enrolled 150 patients into their Phase 2b/3 clinical study of livoletide, completing enrollment for patients ages 8 to 85. The trial will continue to enroll patients ages 4 to 7 years old, and a minimum of 44 lbs...

Sensory Integration Therapy for PWS  [2019 CONFERENCE VIDEO]

Most people with PWS struggle with sensory processing, either seeking or avoiding sensory input. In this 54-minute video, occupational therapists Ashley Waguespack and Jessica Boudreaux explain the sensory issues common to PWS, then dive into sensory integration therapy. They describe in detail activities and solutions to implement at home, including fielding questions during an in-depth audience Q and A. Click below to watch the video...

Two Moms Harvest Hope With 5K for PWS Research

While most of us spend Thanksgiving Day, relaxing, watching football or entertaining family, Rachael Fischer and Julie Foge rise before the sun to host the Harvesting Hope 5K run. 

Since 2015 these two amazing, determined women have hosted this family-focused event — which also includes a 1K — to raise funds for PWS research.

FPWR Announces Second Round of 2019 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our second round of Research Awards in 2019 totaling $708,577. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $13,000,000 to research since 2003.