Foundation for Prader-Willi Blog (46)

PWS Mom's Courage Grows as the Story of Her Daughter Unfolds

A special contribution by One Small Step host Bailey Beasley “Something came back on the microarray.” We had just landed after being care flighted to a large children’s hospital. We had been in the NICU in our hometown for two weeks with undiagnosed ...

February 23, 2018 Read More

Topics: Stories of Hope

PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

The inability to vomit has previously been cited as a characteristic of Prader-Willi syndrome. While there is a reduction in vomiting as compared to neuro-typical peers, 54% of participants in the Global PWS Registry have vomited (n=304) indicating t...

February 22, 2018 Read More

Topics: Research

Dad Believes In an Amazing Life For His Son With PWS

A special contribution by Brian Kalasek My introduction to PWS probably started very similar to other PWS families. We were admitted to the NICU on day 3 of Paxton’s life. He hadn’t really “woken up” yet, but the nurses and doctors up to that point d...

February 16, 2018 Read More

Topics: Stories of Hope

GDF15: A New Appetite-Regulating Pathway With PWS Therapy Potential

A series of recent discoveries have defined a new pathway for regulating appetite and satiety suggesting that a naturally occurring protein in our bodies could have the potential to be a safe and effective therapy for obesity. This protein, known as ...

February 15, 2018 Read More

Topics: Research

Two Moms, 5 Years and $1.7M for PWS Research

Becky McWilliams and Samantha (Sam) Chipetz are a force to be reckoned with! In addition to managing successful careers and juggling a family, therapy appointments and play dates, these two hard working moms have been fundraising for PWS research for...

February 9, 2018 Read More

Topics: Stories of Hope

PWS Clinical Trial: Effects Of GLWL-01 On Hyperphagia, Phase 2

GLWL Research is now recruiting patients for its Phase 2 study to evaluate the efficacy, safety and pharmacokinetics of GLWL-01 in the treatment of patients with Prader-Willi syndrome. The study will compare the effects of GLWL-01 on hyperphagia as c...

February 6, 2018 Read More

Topics: Research

Dr. Nectow Researches Role of DRN Brain Region and Hyperphagia in PWS

Researchers throughout the world are hard at work trying to identify the biological mechanism(s) that drive hyperphagia (excessive eating) in PWS. One of these scientists is Dr. Alexander Nectow at Princeton Univeristy. Dr. Nectow's group studies a r...

February 2, 2018 Read More

Topics: Research

Intellectual Disability and PWS Researcher Godler Awarded $500,000

FPWR–funded researcher Dr. David Godler, of Murdoch Children’s Research Institute and University of Melbourne in Australia, was recently awarded nearly $500,000 AUD from the Turnbull Government’s Medical Research Future Fund (MRFF). The award funds a...

January 30, 2018 Read More

Topics: Research

You Do You! New 'Take Action' PWS Fundraising Tool

When it comes to fundraising for PWS research, I've got good news, and I've got good news: First, in 2017, our community raised $3,200,000 for PWS research! Thanks to everyone who fundraised or supported a fundraiser, last year FPWR funded 18 researc...

January 25, 2018 Read More

Topics: News

FPWR Blog

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PWS Mom's Courage Grows as the Story of Her Daughter Unfolds

PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

Dad Believes In an Amazing Life For His Son With PWS

GDF15: A New Appetite-Regulating Pathway With PWS Therapy Potential

Two Moms, 5 Years and $1.7M for PWS Research

PWS Clinical Trial: Effects Of GLWL-01 On Hyperphagia, Phase 2

Dr. Nectow Researches Role of DRN Brain Region and Hyperphagia in PWS

Intellectual Disability and PWS Researcher Godler Awarded $500,000

You Do You! New 'Take Action' PWS Fundraising Tool

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