Category: News

Two Research Studies Looking for Participants

Hello from the PRETEND/Telehealth team at Case Western Reserve University! We are excited to say that we are gearing up for another enrollment trip for our ongoing studies on Prader-Willi syndrome, this time in San Antonio, TX. We will be there from Wednesday March 8 through Saturday March 11.We are recruiting families with children with PWS 3-11 years...

PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS

The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In...

PWSA (USA) Approves Grant

We are pleased to announce that PWSA (USA) has approved the funding of an important grant: The Effect Of Growth Hormone Substitution On Sleep Disordered Breathing In Young Children With Prader-Willi Syndrome. The researchers have committed that the results will be in a report that could be helpful with physicians and private/ public insurance companies....

Please Participate in Research on PWS Caregiver Stress

I would like to invite you to participate in a research study on the ‘Relationship between caring for individuals diagnosed with Prader-Willi syndrome (PWS) and caregiver stress’. The results will provide vital information to caregivers, service providers, and policy makers on strategies and supports needed in the care of individuals with PWS. The survey will...

Exciting News on Carbetocin for PWS!

Sara Cotter, mom to a child with Prader-Willi syndrome (PWS), has formed a company dedicated to advancing treatments for PWS and related disorders. The company is called Levo Therapeutics (www.levotheraputics.com). Sara has years of experience in the pharmaceutical industry, most recently as an analyst with UBS. She recently left her job to pursue the leadership...

Two New Research Studies

If you live in the Indianapolis area and have a child with PWS between the ages of 3 and 11 years old, you may be eligible for one of these very interesting studies on remote education for PWS. Please read the two attached documents.   The PRETEND (Parent-focused Remote Education to Enhance Development) – Research...

New Webinar DVD and Publication

Must-Have’s For Every PWS Family! Below are two wonderful resources PWSA (USA) is offering to our amazing community. Learn more about them below.   Essential Early Childhood Behavior Management Strategies Three weeks ago, Lisa Graziano, MA, LMFT, presented a webinar entitled, Essential Early Childhood Behavior Management Strategies. Parents found it very helpful in understanding behavior...

Book Now Available through PWSA (USA)

Prader-Willi Syndrome : How Parents and Professionals Struggled and Coped and Made Genetic History By: John Hernandez-Storr Now available through PWSA (USA) — this amazing 256 page book gives never-before-told historical facts on the evolution of the medical world working to understand Prader-Willi syndrome (PWS) entwined with intimate, personal stories of the original PWSA (USA) pioneers....

PWSA (USA) and Shriner Hospital Partnership

I am so pleased and privileged to announce the new partnership between PWSA (USA) and Shriner’s Hospitals for Children.  This relationship is exciting and, indeed, hopeful. During the 2015 PWSA (USA) National Conference I was fortunate to be introduced to Ms. Cheryl Stauss, former First Lady of Shriner’s International.  Cheryl served as First Lady of...

Help Us Learn More: Survey on Dangerous Condition in PWS

Survey: Vascular Blood Clots, Deep Vein Thrombosis (DVT) and/or Thrombosis in Prader-Willi Syndrome Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism’s(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a recent...

Two New Prader-Willi Syndrome Films

PWSAI (Ireland) has released a new film that was produced in cooperation with IPWSO and PWSA (USA). The film is Therapeutic Interventions for the Young Child with Prader-Willi Syndrome presented by Janice Agarwal, CNDT-PT The film was funded from the proceeds of the Galway Cycle 2014. We are very grateful to Janice for her participation...

The Zafgen Clinical Trial Partial Hold

I would like to assure our PWS members that both PWSA (USA) and FPWR have been involved with discussions with Zafgen and the FDA regarding safety issues on the Zafgen clinical trial. A “partial hold” means that the study can continue with additional safety monitoring. We are in full support of the additional safety monitoring...

Oxytocin Phase 2 Study Campaign Reaches Milestone!

In our first month of the Oxytocin campaign, we have exceeded $160,000! The PWSA (USA) Board matching gift fund of $50,000 was exhausted in less than a week! Thank you for your generosity and support for this study. To help us reach our next milestone in this potentially life-changing research study, please donate or register...

Research Funding Opportunities

Celebrating 40 years as a charitable nonprofit, Prader-Willi Syndrome Association (USA) [“PWSA (USA)”] is pleased to offer grant assistance for scientific researchers with an interest in improving the lives of those with Prader-Willi syndrome (PWS). PWSA (USA) is seeking to fund projects for a maximum of $75,000 total per project for a 1-2 year grant...

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