Supporting Families. Saving Lives.
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James Perry, MD, Michael Ackerman, MD/PhD Susan Etheridge, MD, Martin Tristani-Firouzi, MD
To see a video of the Youth Track Program, click here
The Family Program included our 25th Anniversary Take Steps to Stop SADS Walk at Mission Bay, followed by a poolside reception on Friday night. Click HERE to visit the Take Steps to Stop SADS page to see pictures and learn how to host the event in your community. Saturday sessions were full of information about the latest research and treatment of SADS conditions. Saturday night concluded with s’mores around a fire pit with beautiful music provided by Levi Leipheimer, our multitalented official photographer (courtesy of Audentes Therapeutics) playing his Handpan. Approximately 63 families attended from 23 states and 5 countries. Comments from attendees:
“Level of expertise of speakers off the charts.“ “All speakers were amazing.”
“Dr. Perry & Dr. Ackerman being here. So personable. No white coat. Easy to talk to; AWESOME!!!”
“We are hooked. We made life-long friends.”
“The opportunity to talk to each other is most important. Thanks for providing plenty of that time at walk, at poolside event, at s’mores, at breakout sessions..”
Highlights from this year’s conference include:
The opportunity for individual family meetings with Dr. Michael J. Ackerman, allowing attendees to get advice from one of the world’s leading experts on SADS conditions
A research session on Friday sponsored by the Family Support Board Committee, with talks on Patient-Centered Research, Gene Therapy, and Exercise & LQTS.
New Disease-Specific Breakout groups on Saturday afternoon for LQTS Type 1, Type 2, and Type 3, CPVT, Brugada Syndrome, and a flexible disease group to accommodate those who had unique disease types.
The largest ever gathering of Timothy Syndrome families (6 total!) with Katherine Timothy and the doctors who treat them, who met to plan the future of the recently established Timothy Syndrome Alliance.
An International SADS Affiliate meeting on Sunday afternoon with established Affiliates from Canada, Hong Kong, the UK, Mexico, and a new affiliate starting up in Argentina.
“For these kids to get to know others like themselves…...PRICELESS!”
The Youth Track for ages 8 and older included sessions on Genetics, How the Heart Works, Your Device, and New Technology. There were separate sessions for kids and teens with health care professionals to talk about Beta Blockers, Sports, How to Tell Others, Guidebook for Living Well with a SADS diagnosis, and an “Ask an MD” session for teens only with Dr. Ackerman. Other activities included personalizing their Take Steps to Stop SADS T-shirts, creating their healing wall submissions, and an impromptu improv session courtesy of Shelly Savoca from Invitae. AED/CPR training was provided on Saturday thanks to Maureen O’Connor from Project Heartbeat. Comments from kids:
“It’s nice to meet other kids who have the same condition, and know I’m not alone.”
“I liked learning CPR.”
“After learning how to use an AED I feel more comfortable with it”
“S.A.D.S. ---- is the worst acronym ever.”
All of us at the SADS Foundation are privileged to work with and for our families and everyone in the circle who cares for them. We are honored to have spent time with you during our 9th Annual International SADS Foundation Conference and return to our home office further inspired to continue the mission of the SADS Foundation established by our founder Dr. G. Michael Vincent.
Congratulations to program directors James Perry, MD, Michael Ackerman, MD, PhD, Susan Etheridge, MD, and Martin Tristani-Firouzi, MD for jointly planning, organizing, and providing the scientific symposium Putting it Together: From the Genome to the Phenotype. The scientific symposium was held on September 30, 2016, at the San Diego Marriott Mission Valley, and the day included 14 leading experts in their fields covering the latest research and knowledge on channelopathies in the very young, genetic testing and its application, and how to apply lessons learned within the clinic.
Return to Past SADS Conferences