The Canadian Angelman Syndrome Society (CASS) and Angelman Syndrome Foundation (ASF) today formally announce a collaborative research partnership to fund the Expert Panel on Challenging and Difficult to Treat Behaviors in Angelman Syndrome (AS). This collaborative initiative was further strengthened and supported by the generosity of Renee and Fred Pritzker, St. Paul, MN.
Regarding their desire and determination to support these research initiatives, Michel Longtin, CASS President remarked, “CASS supports the initiatives of the Panel on Challenging and Difficult to Treat Behaviors in AS toward the goal of establishing a structure for future research to the benefit of AS individuals, their families, and caregivers. We feel that this research will lead to providing families affected by AS with coping mechanisms that will enhance family life. “
The expert behavioral panel, chaired by behavioral expert Dr. Jane Summers, was convened to provide practical guidelines that assist in the overall management of challenging and difficult to treat behaviors in AS. The results of the panel’s work will be widely accessible, made available through practical and user-friendly formats, and will include web-based presentation in both written and video formats. Key areas the panel will consider will be:
- Self-injurious behaviors
- Attention-seeking behaviors
- Externalizing behaviors that place self and others at risk
- Evidence-based usage of medication in the AS population and how to evaluate effectiveness.
Panel members include:
Jane Summers, PhD, Chair, McMaster University, Hamilton, Ontario, Canada
Sarika Peters, PhD, Vanderbilt University, Nashville, TN
Ronald Thibert, D.O., Massachusetts General Hospital, Boston, MA
Chris Oliver, PhD, Birmingham University, Birmingham, United Kingdom
Steven Calculator, PhD, University of New Hampshire, Durham, NH
Craig Erickson, PhD, Riley Children’s Hospital, IUPUI, Indianapolis, IN
Logan Wink PhD, Riley Children’s Hospital, IUPUI, Indianapolis, IN
Anna Larsen, Adult Issues Study Coordinator, Massachusetts General Hospital, Boston, MA
Regarding the establishment of the expert group, Behavioral Panel Chair, Dr. Jane Summers, shares: “At one time or another, many families of individuals with Angelman syndrome have struggled to cope with challenging and difficult to manage behaviors. These behaviors can have a major impact on family life and also prevent the individual from participating fully in activities at home, school or in the community. Practical, well thought out and timely advice could make a major difference in these types of situations but has not been widely available to most families and care providers. The Expert Panel for Challenging and Difficult to Treat Behaviors has been established to address this need. This internationally renowned panel is made up of neuroscientists and clinicians with expertise in Angelman Syndrome. Together, they bring a variety of perspectives and a depth of experience to the project. The ultimate goal of the panel is to enhance the lives of individuals with AS and their families through the provision of guidelines that outline approaches to understand and address challenging behavior, identify evidence-based intervention strategies and provide practical recommendations about how to implement these. The panel will seek additional collaboration and consultations regarding adult studies, learning, and other neurodevelopmental disorders, as needed.”
“The Angelman Syndrome Foundation has a long-standing history of funding innovative and provocative research. We have gained phenomenal insights into the causative mechanisms of AS and the function of UBE3A. We are keenly aware of the day-to-day and long-term struggles families and care providers face when dealing with challenging and difficult to treat behaviors. These behaviors do not simply vanish over time. The ASF is pleased to support this collaborative research effort with CASS, and with the support of the Pritzker Family, to be able to equip our families with practical guidelines and techniques to effectively manage behaviors in their individuals with AS. We eagerly look forward to the work and results of this expert panel,” said Eileen Braun, Executive Director, ASF.
Research continues to grow and accelerate through the ASF and CASS because of the dedication and support of those who have demonstrated personal and financial commitment to our collaborative research efforts. This is no more readily apparent than by the support of Renee and Fred Pritzker. Their generous gift is dedicated to and is on behalf of their son with AS, Jacob Pritzker.
“Jake has taught us most of what we know about the great joy and complexity of loving a person with disabilities. Jake is also a pioneer. He is one of the first students in our school district with significant disabilities to have gone from pre-school to graduation in an inclusive setting. Currently, he holds down two jobs, enjoys a rich social life and has learned to swim (without a floatation device). His growth and development mirrors the progress that scientists have made in unlocking the secrets underlying AS (that will eventually lead to its treatment and cure). But as in any complex endeavor, advancement of knowledge reveals even more complexity and a keener awareness of just how difficult the endeavor will be.
The fact is, we don’t have all that much understanding about the emotional, behavioral and physiologic changes people with AS encounter as they age. Improving the lives of people with AS is more challenging than funding bench science and genetic research. Think about it: the variability and complexity of behavior is far greater than the genetic mechanism that triggers it. Our debt to our sons and daughters to improve their lives is as great as our wish to prevent this disorder from affecting future generations. This is why we are proud to contribute to the ASF Expert Panel on Challenging and Difficult to Treat Behaviors in AS.”
~Fred and Renee Pritzker
CASS and ASF would also like to acknowledge the tremendous effort of one of CASS’s board members, Heidi Blackburn, whose fundraising has largely made this expert behavioral panel possible. Heidi and Alistair Blackburn’s son Callum (AS) is the inspiration for the tremendous effort she puts into fundraising for AS research.
For further questions regarding CASS and ASF-supported research, please contact the Angelman Syndrome Foundation:
Canadian Angelman Syndrome Society
P.O. Box 37
Priddis, Alberta T0L 1W0 Canada