Foundation for Prader-Willi Blog (49)

My Son Can Do Anything He Sets His Mind To

A special contribution by guest blogger Marissa Marinan Marissa shared her story via our Stories of Hope questionnaire.

March 23, 2018 Read More

Topics: Stories of Hope

2018 PWS Research Symposium and Family Conference - We Can, We Will!

March 19, 2018 Read More

Topics: Research

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, Schaaf-Yang Syndrome

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 an undiagnos...

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

FPWR Blog

Categories

My Son Can Do Anything He Sets His Mind To

2018 PWS Research Symposium and Family Conference - We Can, We Will!

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]

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