Foundation for Prader-Willi Blog (16)

D-dimer Study Yields Important Findings on PWS and Blood Clots

People with PWS have a higher risk for developing blood clots than the general population, but the risk is poorly understood. A recent study explored whether testing for a protein called D-dimer could be an informative tool for predicting blood clot ...

July 18, 2022 Read More

Topics: Research

People With PWS Share Their Hopes and Struggles In New Study

A tremendous amount of work has been done by The PWS Clinical Trials Consortium to understand and document the views of Prader-Willi syndrome families. Now, a new study validates what PWS caregivers have reported, by sharing first-person perspectives...

July 5, 2022 Read More

Topics: Research

Recommendations for Management of Sex Hormones in Adults With PWS

Two new papers from an international group of PWS expert physicians outline the clinical experience and provide recommendations for sex hormone replacement therapy in adult males and females with PWS.

June 28, 2022 Read More

Topics: Research

Insights Into the Sleep, Seizures, and Psychiatric Behaviors in PWS

A newly published paper examines sleep disorders, seizures, and psychiatric concerns in PWS. Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, the study provides a great deal of valuable data and new insight...

June 21, 2022 Read More

Topics: Research

IPWSO Survey Finds Most COVID-Positive People With PWS Had Mild Cases

COVID-19 infections may be particularly worrisome for our loved ones with PWS, since many of the complications associated with PWS—obesity, diabetes, poor respiratory function—are known risk factors for severe COVID disease. In addition, other neurod...

June 8, 2022 Read More

Topics: Research

Sleep Disorders and PWS [2021 CONFERENCE VIDEO]

In this 1 hour and 19‑minute video, Dr. Aaron Chidekel, a pediatric sleep specialist, and Cindy Szapacs, mom to a teenage son with PWS, discuss excessive daytime sleepiness and other symptoms and treatments for sleep disorders in people with PWS. The...

June 7, 2022 Read More

Topics: Research

'It's a Decade of Declan!' Says PWS Hero and Mom

A special contribution by guest blogger Allison Shelton On the occasion of Declan’s tenth birthday this past April 14th, I wrote, “It’s a decade of Declan!” More completely, it has been a decade of our family living in the world of Prader-Willi syndr...

June 1, 2022 Read More

Topics: Stories of Hope

Strategies for Managing Behavior in PWS [2021 CONFERENCE VIDEO]

In this one hour and 17‑minute video, Dr. Tony Holland, Emeritus Professor of Psychology, Cambridge University, discusses strategies for effective behavior management in PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Con...

May 16, 2022 Read More

Topics: Research

Baby Teeth Cells Give Insight on the Molecular Basis of Autism in PWS

In Prader‑Willi syndrome (PWS), the two main genetic subtypes are PWS by deletion (a small part of dad’s chromosome 15 is missing), and PWS by maternal uniparental disomy (UPD; where two copies of chromosome 15 are present from the mother with no cop...

May 9, 2022 Read More

Topics: Research

FPWR Blog

Categories

D-dimer Study Yields Important Findings on PWS and Blood Clots

People With PWS Share Their Hopes and Struggles In New Study

Recommendations for Management of Sex Hormones in Adults With PWS

Insights Into the Sleep, Seizures, and Psychiatric Behaviors in PWS

IPWSO Survey Finds Most COVID-Positive People With PWS Had Mild Cases

Sleep Disorders and PWS [2021 CONFERENCE VIDEO]

'It's a Decade of Declan!' Says PWS Hero and Mom

Strategies for Managing Behavior in PWS [2021 CONFERENCE VIDEO]

Baby Teeth Cells Give Insight on the Molecular Basis of Autism in PWS

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