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Foundation for Prader-Willi Blog | News (9)

Feeding Challenges and PWS: Q&A With Speech Pathologist Sara Parker

Food, hunger, mealtimes, eating — these are all important issues for people with PWS and their families. Sara Parker knows all about feeding challenges and PWS. She's a speech pathologist who specializes in pediatric feeding and has spent more than t...

Topics: News, Research

Art Auction Combines One-of-a-Kind Art AND Support for PWS Research

4/17/2017 — Note: Bidding closed yesterday, but you can still see these beautiful pieces of art on Facebook! Twenty unique paintings are available to the highest bidders in a unique art auction benefiting the Foundation for Prader-Willi Research (FPW...

Topics: News

Zafgen Donates Hyperphagia Questionnaire to FPWR for Use in Clinical Trials

Zafgen, Inc., has donated its Hyperphagia Questionnaire for Clinical Trials (HQ-CT) instrument to FPWR to help enable the development of potential therapies for Prader-Willi syndrome. The HQ-CT is derived from a well-established, caregiver-reported q...

Topics: News

Every Donation Will Be Matched Until Thanksgiving!

We need your help and there has never been a better time to DOUBLE your impact! From now until Thanksgiving, EVERY donation made to our organization will be MATCHED by Leon and Irina Shaulov.

Topics: News

FPWR Receives $30,000 PCORI Award for Real World Data Workshop

The Patient-Centered Outcomes Research Institute (PCORI) has awarded FPWR $30,000 to support real world data research readiness in the Prader-Willi syndrome community! This support was awarded to FPWR as a Eugene Washington PCORI Engagement Award.

Topics: News

Genetic Therapy Researchers Work to Reactivate PWS Genes, Identify New Targets

All individuals are born with two copies of chromosome 15: one copy comes from the mother, the other the father. In the case of Prader-Willi syndrome, the paternal copy is missing a portion of the chromosome (deletion), or is gone altogether(UPD), bu...

Topics: News

Team FPWR Runs the TCS New York City Marathon

For the first time ever, the Foundation for Prader-Willi Research will be represented November 6th on the streets of New York at the largest marathon in the world – The TCS New York City Marathon! “We are excited to partner with the TCS New York City...

Topics: News