Topic: Communication- Making it Count
Speaker: Judy Lariviere, M.Ed.,OTR/L, UCSF
(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: 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 Syndrome
Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome.
Our goal is to help you frame an empowered life for yourself today, while we pursue our collective Hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.
Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment.
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children’s Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020.
This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it.
Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.
RettEd Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams.