Author Archives: Mary Chapman

Supporters Poised for International Angelman Day on Feb. 15

International Angelman Day is Feb. 15 and, around the world, about 50 organizations and scores of supporters will come together to bring attention to the neurological disorder and the needs of the half-million individuals thought to be affected. Angelman syndrome (AS) is a complex genetic disease that can…

ASF Family Fund Opens to Support Angelman Patients in UK

Angelman syndrome families in the United Kingdom may now request financial support for items — like tablets or adaptive equipment — that could improve a patient’s life quality under an expansion of the Angelman Syndrome Foundation (ASF) Family Fund. The ASF fund was opened in 2019 to help…

Partnership Helps Expand Financial Aid to Families in UK

Families of Angelman syndrome (AS) patients in the U.K. have a new resource to help pay for items they could not otherwise afford, thanks to a new partnership between the Angelman Syndrome Foundation (ASF) and Angelman UK. The partnership, which includes the Canadian Angelman Syndrome Society…

FAST Unites Global Research Experts for First INSYNC-AS Meet

The inaugural meeting of the International Angelman Syndrome Research Council, known as INSYNC-AS, focused on the translational research landscape in Angelman syndrome (AS), and on prospects for new treatments. The recent assembly of Angelman scientists and experts from around the world was pulled together by the Foundation…

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…

Jacob Family Pledges Up to $250K to FAST for Donation Matches

Philanthropists Ryan and Annie Jacob have pledged up to $250,000 to the Foundation for Angelman Syndrome Therapeutics, known as FAST, through a new donation matching program. The Austin, Texas-based couple, who have a son with Angelman syndrome, will match donations up to that amount through FAST’s fundraising initiative,…