Foundation for Prader-Willi Blog (45)

From the CEO's Desk: Together We Can Make Cutting-Edge PWS Research Possible

As my second month in my new role as FPWR's CEO concludes, I would like to reflect on some of my early observations and experiences with this truly incredible Prader-Willi community. During the short time I've been in this role, I've met or spoken wi...

March 16, 2018 Read More

Topics: Stories of Hope

Study Compares Schaaf-Yang and Prader-Willi Syndromes

Dr. Christian Schaaf and his group, in collaboration with Dr. Jennifer Miller, has published a new study examining clinical similarities and differences between Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS). Dr. Schaaf was the first to d...

March 14, 2018 Read More

Topics: Research, SYS

New PWS Publications In High-Impact Medical Journals

Researchers are making progress every day toward FPWR's mission of eliminating the challenges of PWS and advancing therapeutic development. When their discoveries are published, that's an exciting moment for our community! So far in 2018, two notable...

March 8, 2018 Read More

Topics: News

ICD-10 Coding Adventures! Why PWS Needs Its Own ICD-10 Code

A big shout out to Dr. Dan Driscoll today! He is at a meeting of the ICD-10 Coordinating & Maintenance Committee (CMC) in Baltimore, making the case that PWS should have its own, unique ICD-10 code. What’s an ICD-10 code, you may ask? That’s the ...

March 7, 2018 Read More

Topics: News

Preventing Mental Illness in PWS: New Study Identifies Early Signs

Behavior and mental health issues are important aspects in Prader-Willi syndrome (PWS), impacting many individuals with the syndrome and their families. In particular, one of the most challenging aspects for families to deal with can be symptoms of s...

February 28, 2018 Read More

Topics: Research

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

FPWR Blog

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From the CEO's Desk: Together We Can Make Cutting-Edge PWS Research Possible

Study Compares Schaaf-Yang and Prader-Willi Syndromes

New PWS Publications In High-Impact Medical Journals

ICD-10 Coding Adventures! Why PWS Needs Its Own ICD-10 Code

Preventing Mental Illness in PWS: New Study Identifies Early Signs

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

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