Author Archives: Mary Chapman

McQuade Center, Sentinel Oncology Working on New Therapy

The McQuade Center for Strategic Research and Development (MSRD) will collaborate with Sentinel Oncology for the clinical development of a potential breakthrough treatment for fragile X syndrome (FXS). Under agreement terms, the MSRD, which funds innovative early stage research and development programs, will work with the…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

UC Davis Offers Program for Intellectually Disabled

Applications are being accepted for an innovative new four-year college program at the University of California, Davis (UC Davis) for students with intellectual disabilities such as fragile X syndrome. The program is said to be the first of its kind in California and is a collaboration of…

Filmmaker Seeks Videos From Fathers of Children with Fragile X

Fathers or male caregivers of children with fragile X syndrome are invited to contribute to a U.K. film project exploring what it’s like to raise someone with learning or behavioral challenges. Olivia Hird, a documentary filmmaker for the nonprofit organization Nip in the Bud, is seeking cellphone videos…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…