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FPWR Blog

Interview with the FPWR Research Team [2019 CONFERENCE VIDEO]

In this 57- minute video, FPWR Executive Director Susan Hedstrom moderates as the FPWR research team provides an update on PWS research, achievements to date, and what we are doing to develop treatments for our loved ones with PWS. This session inclu...

Topics: Research

Gillian Segall Inspires PWS Community With Message of Hope [2019 CONFERENCE VIDEO]

Gillian Segall is an 18-year-old high school senior from Chicago, who loves to swim and take care of animals and also happens to have PWS. In this inspiring 15-minute interview, Gillian kicks off the 2019 FPWR Family Conference in New Orleans. Click ...

Topics: Research

What's Happening in PWS Research? [2019 CONFERENCE VIDEO]

In this 50-minute video, Theresa Strong and other FPWR research team members sum up the presentations given at the 2019 PWS Research Symposium. This overview provides a great synopsis of PWS research developments and work in progress, including PWS g...

Topics: Research

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...

Topics: News

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

In this 51-minute presentation, Dr. Katy Chambers helped participants 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 wi...

Topics: Research

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 Atki...

Topics: Research

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, c...

Topics: Research

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

Gene therapies for PWS have the potential to provide transformative treatments 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 o...

Topics: Research

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...

Topics: Research