Angelman Syndrome Foundation – January 2014
New resources at your fingertips
The Angelman Syndrome Foundation offers valuable resources to families and caretakers of individuals
with Angelman syndrome. Check out what’s new!
ASF Educational Webinar Series
The ASF Educational Webinar Series provides you with the most up-to-date information about
living with Angelman syndrome. The ASF invites experts to speak about topics that help families
and caretakers improve quality of life for individuals with AS, addressing topics such as research
updates, clinical developments, tips for everyday living and managing symptoms, and many more. The
webinars also allow you to ask questions and interact with these experts, maximizing the value of your
participation. The webinars are intended to be a key source of information and support, and we hope
that you find this resource valuable in your journey with AS. To learn more and see the list of upcoming
speakers, please click here.
Informational Series on Angelman Syndrome Behaviors
The latest update to the Informational Series on Angelman Syndrome Behaviors, Neurologic and
Medical Influences on Aggressive Behavior in Individuals with AS, addresses the complex relationship
between aggressive behavior and management of the many medical issues that are commonly
experienced by individuals with AS. Developed by Ron Thibert, D.O., a renowned expert on AS and a
clinician at the Comprehensive Angelman Syndrome Clinic in Boston, this latest update explores how
seizures, sleep, gastrointestinal and orthopedic health, and pain management affect aggression, and
how these medical issues can increase or decrease aggressive behavior. Click here to access this update.
Rockville Centre St. Patrick’s Day Parade
The ASF is incredibly honored to be chosen as the national charity to benefit for the 2014 Rockville
Centre St. Patrick’s Day Parade! The Parade which takes place in Rockville Centre, New York on Long
Island, raises funds at various events throughout the year leading up to St. Patrick’s Day, which are
donated to three charities. The more who participate in these events, the more money will come back
to the Angelman syndrome community! Mark your calendars for:
• January 24, Our Taste Of Rockville Centre, St. Agnes Parish Center: a food and wine tasting event
• March 16, CJ Coffee Shop Fundraiser, CJ’s Coffee Shop: you’ll be hard-pressed to find a better
breakfast on Long Island!
• March 21, Grand Marshall Reception, RVC Links: a formal reception honoring Grand Marshall
• March 22, PARADE DAY! Commemorative Mass at St. Agnes Cathedral followed by the Parade
down Maple Avenue
Save the Date! Mark your calendars for the 2014 ASF National Walk on May 17th. There are 29 walk sites this year and we look forward to seeing you!
Welcome our new Board members
Please join the Angelman Syndrome Foundation in welcoming two fathers to individuals with AS to the Board of Directors
Justin Grill is a board-certified emergency medicine physician and covers three emergency rooms for Emergency Health Partners along Michigan’s Lake Michigan shore, and was recently appointed as Assistant Director of Medical Education for Mercy Health. A public speaker and expert regarding emergency issues with individuals with Angelman yndrome, Justin and his wife, Carrie, are parents to four-year-old Noah, who is diagnosed with Angelman syndrome, and his siblings, two-year-old Daniel and 10-monthold
Hannah. The Grill family has been involved with the ASF since Noah’s diagnosis in 2011, and has held fundraisers in their hometown of Spring Lake, Mich. Says Justin, “As a parent and a physician, I have a keen interest in Angelman syndrome research and in supporting innovative projects that bring treatments to individuals with Angelman syndrome. Education is also a major component of my medical practice so I also have an interest in how we can best educate parents and caregivers of individuals with Angelman
syndrome and the general community, and I hope to use my skills in these areas to further support the Angelman syndrome community.”
Tim Bousum works in specialty sales with AstraZeneca Pharmaceuticals. He and his wife, Maiya Dos, an architect with TriPyramid Structures, have two children: six-year-old Cooper, and three-year-old Bode, who was diagnosed with Angelman syndrome in 2011. Residents of Ipswich, Mass., the Bousum family are active supporters of the ASF, and have raised more than $45,000 during the last three years for the ASF National Walk site in Boston. Says Tim, “By joining the Board of Directors, I hope to further raise awareness of Angelman syndrome in our communities and contribute to the vision of improving the lives of our loved ones with Angelman syndrome. I have seen first hand what this organization can do—from opening Angelman syndrome clinics at major teaching hospitals, to the Biennial Conferences that balance research, medical care, science and day-to-day living strategies at the family level, to funding groundbreaking research, the ASF is making a difference in the lives of our loved ones with Angelman syndrome.”