FOR IMMEDIATE RELEASE

Contact: Amanda Moore, Angelman Syndrome Foundation

Email: AMoore@angelman.org

Date: April 18, 2023

Two organizations leading activism for the rare and severe neuro-genetic disorder Angelman syndrome have entered a partnership to expand their reach. Angelman Syndrome Foundation (ASF) and Canadian Angelman Syndrome Society (CASS) have each served the Angelman syndrome community for more than 30 years. As part of this partnership, CASS has rebranded to become Angelman Syndrome Foundation Canada (ASF Canada).

 The collaboration allows both organizations to leverage each others’ robust networks to move closer toward establishing a world where individuals with Angelman syndrome can reach their full potential and live their best lives.

 “ASF and CASS have always believed in the same philosophy and programming,” said Amanda Moore, CEO of Angelman Syndrome Foundation. “Both organizations’ No. 1 focus has always been to assist and strengthen families on their journey with Angelman syndrome. This collaboration makes both organizations stronger and strategically makes sense to best serve our community.”

 “Becoming ASF Canada is the continuation of a great journey for CASS,” said Brad Schiele, President of ASF Canada (formerly CASS). “It’s reflective of our shared mission with ASF, progress toward achieving greater impact and ultimately, success in serving our communities.”

 ASF, headquartered near Chicago, Ill., is a global leader in funding critical Angelman syndrome research, having invested more than $15 million in research to date. While investing heavily in research, ASF also provides essential support and clinical care to families. It funds 25 ASF Clinics across the globe that provide access to the highest quality, evidence-based medical care, customized to Angelman syndrome. Four additional ASF Clinics are planned to be onboarded this year.

 ASF Canada, formerly CASS, is headquartered in Edmonton, Alberta, Canada. It has laid a significant foundation to expand clinical care in Canada. By leveraging the existing ASF network, this partnership will more easily establish more ASF Clinics in Canada to better serve families in that area.

 “We are focused and committed to developing a strong ASF Clinics presence in teaching hospitals across Canada,” said Kelly Meissner, Executive Director of ASF Canada. “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.”

 “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,” said  ASF Board President Kyle Rooney.

 This partnership is effective immediately. ASF and ASF Canada will each continue to operate as independent organizations, each with their own budgets and board of directors.

 “The spirit of this collaboration shows we are not slowing down,” Moore said. “Both organizations will continue to work hard every day to support families in their journey from diagnosis to therapeutic treatments”.

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ABOUT ANGELMAN SYNDROME
Angelman syndrome is a rare but severe neuro-genetic disorder that occurs in one in 15,000 live births (or 500,000 people worldwide). Common signs and symptoms, such as walking and balance disorders, gastrointestinal issues, seizures and speech impairments, usually appear in early childhood. It is caused by a loss of function of the UBE3A gene in the 15th chromosome derived from the mother. It shares symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi syndrome. It has no cure.

ABOUT ANGELMAN SYNDROME FOUNDATION
The mission of Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure. To learn more, visit Angelman.org.

ABOUT ASF CANADA (FORMERLY CASS)
The mission of ASF Canada is to provide Angelman families with support and resources through its community to give those living with Angelman syndrome a more meaningful life. To learn more, visit AngelmanCanada.org.