Jan
30
Tue
Jan 30 @ 1:00 pm – 2:30 pm
Topic: "What is Rett Syndrome?"... the Diagnosis, the Symptoms, the Natural History, and Best Care Interventions Today Speaker: Alan Percy, MD, UAB Click to View Video Read the Q&A
Categories: Previous Webinars
Feb
13
Tue
Feb 13 @ 1:00 pm – 2:30 pm
Topic: Respiratory Issues in Rett Syndrome, esp during cold and flu season Speaker: Marianna Sockrider, MD, DrPH, AE-C, TCH Click to View Video Read the Q&A
Categories: Previous Webinars
Mar
13
Tue
Topic: Puberty and Adulthood: Information for moms, dads, everyone! Speaker: Jane Lane, RN, UAB Click to View Video Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Apr
10
Tue
Apr 10 @ 1:00 pm – 2:30 pm
Topic: Common GI Issues in Rett syndrome, How to Intervene and Clinical Research Outlook Speaker: Dr. K Motil, BCM, Texas Children's Hospital Click to View Video Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
May
8
Tue
Topic: IEP: Strategies for Rett Success Speaker: Valerie Owen, PhD Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Jul
10
Tue
Topic: Communication- Making it Count Speaker: Judy Lariviere, M.Ed.,OTR/L, UCSF Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Aug
7
Tue
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. Click Here to View Video
Categories: Previous Webinars
Aug
14
Tue
Topic: Understanding Autonomic Dysfunction in Rett Syndrome Speaker: Jeff Neul, MD, PhD, Vanderbilt University Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Categories: Previous Webinars
Sep
11
Tue
Topic: Epilepsy: Incidence, Treatments & Research Speaker: Eric Marsch, MD, PhD, CHOP Click to View Video Read the Q&A
Categories: Previous Webinars
Oct
9
Tue
Oct 9 @ 1:00 pm – 2:30 pm
Topic: Planning for a Protected Tomorrow with Special Update on ABLE Accounts Speaker: Mary Anne Ehlert, CFP, Protected Tomorrows, Inc Click to View Video Read the Q&A
Categories: Previous Webinars
Nov
13
Tue
Topic: Gross Motor Skills, benefits of Environmental Enrichment Speaker: Jenny Downs, PhD Telethon Kids Institute, AU Click to View video
Categories: Previous Webinars
Dec
11
Tue
Topic: Siblings Unique Concerns, Unique Opportunities Speaker: Emily Holl, Director, Sibling Support Project Click to View Video
Categories: Previous Webinars
May
11
Sat
Categories: Special Events - Meetings/Symposiums
May
18
Sat
Enjoy an accessible family friendly park for 2 days with a private dinner on Saturday. Tickets are $50/person; this is at least a $70 savings! Plan your Accessible Seasame Place Day!
Dinner:
Date: Saturday, May 18 Time: 6:00 - 7:00 pm Where: Abby's Garden Grille After 5:30 pm parking is free Tickets must be pre-purchased by Wednesday, May 8th 2019 and are non-refundable. Tickets include: Private after-hours dinner with a Sesame character appearance, and 2-day park passes to be used on Saturday, May 18th and Sunday, May 19th. The park is less than a mile away from the Rett Ed Day at Sheraton Bucks County. Parking at Sesame Place is $27 or $23 based on the lot. The Sheraton offers free parking and free non-ADA shuttle. For more information contact Paige Nues [email protected] or with questions to Erin Cassano (local Rett parent) [email protected] Categories: Special Events - Non-Fundraising Events
Jun
11
Tue
Topic: Nutrition Strategies for Rett Syndrome Speaker: Suzanne Geerts, MS, RD, LD UAB Register
Categories: Previous Webinars Webinar
Jun
22
Sat
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jul
20
Sat
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. REGISTER NOW!Aug
27
Tue
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. Registration & Information
Categories: Education Slider Webasts
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