The conference, held at the Omni King Edward Hotel in downtown Toronto, provided the Angelman syndrome (AS) community a weekend of team-building, education and empowerment.
The main focus of the conference was the 20-plus thematic sessions, all focused on Angelman syndrome and related topics. Some of the sessions included:
- A keynote speech about seizures in Angelman syndrome and current medical interventions by pediatric neurologist Ron Thibert;
- Introductions to alternative and augmentative communication (AAC) (Erin Sheldon);
- Sneak peaks of AAC-friendly classrooms (Cori Stell with Sarah Rivard);
- Discussions about self-care and mental health for parents of children with Angelman syndrome (Lynn Schaan);
- Interactive sessions for parents to try AAC themselves (Erin Sheldon, Cori Stell and Sarah Rivard);
- Latest updates on research and clinical trials and introductions to genetics by molecular biologist and consultant with Ovid Therapeutics Becky Burdine;
- Ideas for families of kids in their double-digits: where to find books, how to engage in activities, curriculums to advocate for or even considering getting for home use (Caroline Musselwhite);
- Introductions to One Page Profile, a tool to help Angelman children and others communicate (Erin Sheldon, Cori Stell and Sarah Rivard);
- Introductions to Pictello, a book-making app that helps communication and learning (Stell, Rivard and Meissner);
Both conference days started with morning yoga sessions, whic has been shown to benefit patients with scoliosis (abnormal curvature of the spine), as well as to maintain overall health and improve coordination issues while strengthening the core musculature.
Angelman syndrome often is misdiagnosed as autism or cerebral palsy in children. Babies may experience delayed physical and mental development and most pediatric patients also typically smile and laugh frequently with no stimulus. They also require less sleep than other children their age.
As they grow, children generally show speech impediments, coordination issues and seizures. Common signs include restlessness, short attention spans, scoliosis and others.