ASF, CASS team up to broaden reach within Angelman community

ASF has given more than $15 million toward research over 30 years

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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The U.S.-based Angelman Syndrome Foundation (ASF) and the Canadian Angelman Syndrome Society (CASS) have partnered up to broaden their reach and expand their offerings within the Angelman community.

As part of the team-up, CASS has changed its name to Angelman Syndrome Foundation Canada (ASF Canada). By working together, the two organizations seek to use their networks and resources to help even more people with Angelman syndrome.

“This is an exciting partnership that will illustrate there is strength in collaboration that helps both organizations deliver more depth in family services, research and clinical trial readiness,” Kyle Rooney, president of ASF’s board of directors, said in an announcement.

Angelman syndrome is a genetic disease that can cause developmental delays, problems with speech and balance, and seizures. While there’s no cure, treatments can help manage some of the disease’s symptoms.

Living with Angelman syndrome can be challenging. People with the disease have difficulty sleeping and may need help with activities of daily living, such as eating, dressing, and going to the toilet.

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Over 30-plus years, ASF has given more than $15 million toward research for Angelman syndrome. The foundation, headquartered in Chicago, also provides support to families and has a network of 25 clinics around the world that help people with Angelman syndrome get medical care that’s tailored to their needs.

The foundation plans to add four more clinics to its network this year.

CASS, now ASF Canada, also expects to expand its network of clinics through its partnership with ASF.

“We are committed to advancing better care and treatment options for individuals living with Angelman syndrome, and building an empowered community that keeps families strong,” said Kelly Meissner, executive director of ASF Canada.

“ASF and CASS have always believed in the same philosophy and programming,” said Amanda Moore, CEO of ASF. “Both organizations’ No. 1 focus has always been to assist and strengthen families on their journey with Angelman syndrome.”

They’re working together, but ASF and ASF Canada will still be separate organizations with their own board of directors and their own budgets.

“Both organizations will continue to work hard every day to support families in their journey from diagnosis to therapeutic treatments,” Moore said. “This collaboration makes both organizations stronger and strategically makes sense to best serve our community.”