Topic: U.S.-Russia Rett syndrome Cultural Exchange
Speaker: Olga Timutsa, President, Rett Syndrome Association of Russia, Mother to Katerina
Olga Timutsa will be visiting the U.S. as a guest of Rettsyndrome.org for a cultural exchange focused on diagnosis, care, and life for children and adults with Rett syndrome and their families. Hear Olga share about life in Russia with Rett syndrome and how our research and efforts have a global impact.
Topic: Understanding Autonomic Dysfunction in Rett Syndrome
Speaker: Jeff Neul, MD, PhD, Vanderbilt University
(you will be prompted to submit a registration form to view the video)
Audience questions are all addressed by our Speaker within the recording
Topic: Epilepsy: Incidence, Treatments & Research
Speaker: Eric Marsch, MD, PhD, CHOP
Topic: Planning for a Protected Tomorrow with Special Update on ABLE Accounts
Speaker: Mary Anne Ehlert, CFP, Protected Tomorrows, Inc
Topic: Gross Motor Skills, benefits of Environmental Enrichment
Speaker: Jenny Downs, PhD Telethon Kids Institute, AU
Topic: Siblings Unique Concerns, Unique Opportunities
Speaker: Emily Holl, Director, Sibling Support Project
Topic: Nutrition Strategies for Rett SyndromeRettsyndrome.org Ed Day hosted by TBD – Boston, MA
Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Rettsyndrome.org Clinical Research Center of Excellence
Intended for anyone wanting to connect on issues important to Rett syndrome families, especially clinical trial information and emphasis on the enriched environment. Attendees will enjoy a fun camp-style day of discussion and “living education” activities that will cover: research updates, medical and therapeutic interventions, and communication strategies.
WHEN | Saturday, July 20, 2019
WHERE | Camp Arroyo, 5555 Arroyo Road, Livermore, CA 94550
TIME | 9:00a.m. – 4:00p.m. (please arrive at 8:30a.m.)
Fee: $10/per person. Diagnosed children are FREE.
Includes: Presentations, hands-on activities and demonstrations, interactive panel discussion, continental breakfast and lunch. We will have an onsite photographer for family portraits for RSO awareness and education materials. If you choose to participate, photos will be shared with you at no charge.