Events

May
11
Sat
Adulthood: Living and Lifestyle Options
May 11 @ 1:00 pm – 2:30 pm

Speakers: Jenny Downs, PhD, Michelle Stahlhut, PT, PhD, Theresa Bartolotta, PhD, Donna Witzleben
Special Day/Time : Saturday, 11:00 AM EST

Register

Jun
11
Tue
Nutrition Strategies for Rett Syndrome
Jun 11 @ 1:00 pm – 2:30 pm

Topic: Nutrition Strategies for Rett Syndrome
Speaker: Suzanne Geerts, MS, RD, LD UAB

Register

Jul
9
Tue
Genetics of Rett Syndrome and MECP2
Jul 9 @ 1:00 pm – 2:30 pm

Topic: Genetics of Rett Syndrome and the MECP2 Gene
Speakers: Steve Skinner, MD and Hannah Warren, LMSW

Register

Sep
10
Tue
RettEd: 2019 Research Update 20 Years Since the MECP2 Gene Discovery feat. Huda Y. Zoghbi, M.D.
Sep 10 @ 1:00 pm

Please join us Tuesday, September 10th at 1:00 pm eastern with Huda Y. Zoghbi, M.D., Director, Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital; Baylor College of Medicine as we journey from discovery of the Rett syndrome disease-causing MECP2 gene to where that discovery and subsequent learnings have taken us to today.

This live webinar is intended to provide hope and inspiration to caregivers and families. Our goal is to help you frame our collective Hope for better treatments and ultimately a cure for Rett syndrome while empowering you with strategies in the here and now. 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 webinar topics, and to access recording links from past webinars 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

Oct
15
Tue
RettEd: Newly Published Communication Guidelines for Rett
Oct 15 @ 1:00 pm

Newly Published Communication Guidelines for Rett

Tuesday, October 15, 2019
1:00pm
Webinar

Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts.

Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards 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.

Registration & Information

Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm

Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about 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 Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Apr
9
Thu
At-Home Moves and Stretches for Tweens & their Caregivers, feat. Meir Lotan
Apr 9 @ 11:00 am – 12:00 pm

Join us April 9 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with 4 U.S. families. Meir will work with their children who are between 8 and 13, with a range of abilities, using what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home.

All live sessions will be posted on YouTube after the training.

Apr
16
Thu
At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan
Apr 16 @ 11:00 am – 12:00 pm

Join us April 16 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with Rett families. Meir will work with their adult children who have a range of abilities. He will use what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home.

All live sessions will be posted on YouTube after the training.

Apr
27
Mon
Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta 
Apr 27 @ 2:00 pm – 3:00 pm

Join us Monday, April 20 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they introduce Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the first of two sessions on Communication interventions.

This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome.

All live sessions will be posted on YouTube after the training.

Apr
30
Thu
Use Your Child’s Track System: Moves & Stretches, feat. Meir Lotan, PhD, PT
Apr 30 @ 11:00 am – 12:00 pm

Join us for our next live training session with Meir Lotan, PhD, PT, on Facebook. Dr. Lotan will be focusing on how to use your child or loved one’s home track system & ceiling lift for appropriate moves and stretches.

Dr. Meir Lotan will also use this time to answer your questions. Take some time to watch the previous videos (found here) and submit your questions by Sunday, April 26 for Dr. Lotan through this survey: https://www.surveymonkey.com/r/9VDNM9W.

Dr. Lotan will try to answer all your questions during our Facebook Live session.

All live sessions will be posted on YouTube after the training.