The Angelman Syndrome Foundation (ASF) and the Canadian Angelman Syndrome Society (CASS) are partnering, both to increase research into the complex neurological genetic disorder and to support the families affected by it.
Initiatives arising from the collaboration will open in phases over the next 12 to 18 months. The partnership also will involve the support of ASF efforts and offerings such as the Family Fund, clinical research network expansion, Angelman research, family resources, and fundraising. During October and April, families can apply to the Family Fund for financial assistance to gain access to resources to improve the quality of life for individuals with Angelman.
The idea here is that, by collaborating, the organizations can amplify the impact of all donor contributions, and make a greater impact on the Angelman community.
“At the Angelman Syndrome Foundation, we believe that when we collaborate and work together as a community, we can make a bigger impact to support families on their AS journey,” Amanda Moore, ASF’s CEO, said in a press release.
“The ASF is thrilled to collaborate with CASS to continue the mission of supporting all AS families from diagnosis to cure and beyond,” Moore added.
The collaboration comes after extensive planning by both organizations, and following feedback from the Angelman community. The two nonprofit organizations, which have operated independently for more than 25 years, do share similar missions. The aim of ASF is to advance awareness and treatment of Angelman syndrome through education, research, and patient and family support. Meanwhile, CASS seeks to improve the life quality of Angelman patients and caregivers through education and the mitigation of day-to-day stressors.
The Canadian Angelman Syndrome Society hosts conferences, funds research, sponsors communication camps, and organizes family gatherings. The weekend-long communication camps support Angelman patients — who often have complex communication needs — and their families in the use of alternative and augmentative communication systems. The organization also offers an Ambassador Program to provide support to new patients and their families. CASS’ major fundraising events include the black-tie event, Red Gala, and the 5K Walk for Angels.
“This is a very significant announcement for CASS and a very exciting time for the Canadian AS community,” said Brad Schiele, CASS’ president. “The ability to leverage on the vision, leadership and networks established by the ASF will allow CASS to better support Canadian families throughout their AS journey.”
Angelman syndrome primarily affects the nervous system. Characteristic symptoms include developmental delays, intellectual disabilities, movement and balance problems, and seizures.