RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
Tuesday, August 11, 2020
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean...
Learn MoreCOVID-19 Resources and Activities
Upcoming Trainings / Past Live Recordings / Enrichment Activities / Communication Resources / Recommended Webcasts / Alliance Resources
In the wake of this global health crisis, we want to empower you with resources to help your family during this time. You may be feeling isolated and stretched without your support team, but we believe that you are strong enough to make it through this. Making adjustments for the home may be just what you need.
Rettsyndrome.org has mobilized our global network of Rett experts, researchers, and partners to develop specific resources for you to use at home. We hope these resources will help keep your child, yourself, and your family on track.
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Upcoming Home Bound Trainings
RettEd: Holiday Life Hacks for Rett Syndrome feat. a panel of parent experts
Tuesday, September 8, 2020
Please join us Tuesday, September 8, 2020 at 5:00pm Eastern Time (New York) with Rettsyndrome.org and a panel of creative...
Learn MoreRettEd: Clinical Trial Update
Tuesday, October 13, 2020
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial...
Learn MoreRettEd: Communication Guidelines and Workbook for Rett Syndrome feat. Theresa Bartolotta, PhD
Tuesday, November 10, 2020
Please join Rettsyndrome.org on Tuesday, November 10, 2020 at 1:00pm (EDT) to learn how to put the Communication in Rett...
Learn MoreWhat Do They See? Vision in Rett Syndrome
Tuesday, December 8, 2020
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Dr. Tim Benke about Cortical Visual Impairment (CVI)...
Learn MoreAt-Home Training Session Recordings
Current State of Rett Syndrome Research
Dr. Dominique Pichard provides an update on the current state of Rett research, clinical trials, and answers your questions. Aired 6/9/20
At-Home Aqua Therapy
Briana Czerwinski, PT, shares ideas for modified aqua therapy that you can do at home in your pool, hot tub, jacuzzi or bathtub. Air Date: 5/26/20
Communication Intervention Strategies, Part 3
Gill Townend, PhD and Theresa Bartolotta, PhD share additional strategies to help those with Rett syndrome. Aired 5/11/20
Communication Intervention Strategies, Part 2
Gill Townend, PhD and Theresa Bartolotta, PhD introduce intervention strategies to help those with Rett syndrome at any age. Aired 5/4/20
Moves & Stretches Use Your Child’s Tract System
Dr. Lotan focuses on ways to use your loved one’s wheelchair or home track system for moves and stretches. Aired 4/30/20
Communication Intervention Strategies, Part 1
Gill Townend, PhD and Theresa Bartolotta, PhD introduce intervention strategies to help those with Rett syndrome at any age. Aired 4/27/20
Moves & Stretches for Adults with Rett
Dr. Lotan works with 2 families to demonstrate stretching and movement techniques with their adult children with Rett syndrome. Aired Live 4/16/20
Moves & Stretches for Tweens and Caregivers
Dr. Meir Lotan works with 4 U.S. families to demonstrate how they can use items around their house to keep their loved ones active and moving. Aired Live 4/9/20
Movement Techniques for Caregiver & Child
Dr. Meir Lotan demonstrates movement techniques and what families can do with their child at home to keep them physically active. Aired Live 4/2/20
Communication Engagement Strategies
Dr. Gill Townend and Dr. Theresa Bartolotta share ways to optimize communication engagement for those with Rett. Aired Live: 3/30/20
Physical Therapy Strategies for Home
Dr. Meir Lotan demonstrates with two families how you can use tools at home to provide physical therapy for your children. Aired Live 3/26/20
Communicating & Connecting While at Home
Judy Lariviere, M.Ed., OTR/L shows how to support your loved one with Rett syndrome in their communication with engagement and participation in some fun family activities.
Home Enrichment Activities
We have mobilized our global therapy experts, advocates and parents to put together practical enrichment therapy ideas to use at home. This resource contains ideas that may be helpful for you and your child with Rett syndrome while you are at home. The ideas are based on the concept of participation, that is meaningful involvement in activities of daily life, with focus on the home setting.
Recommended RettEd Webcasts
Respiratory Issues in Rett Syndrome
more
If you have trouble viewing, click here.
Communication: Making it Count!
more
If you have trouble viewing, click here
Communication Guidelines for Rett Syndrome
more
If you have trouble viewing, click here.
Taking Care of Ourselves
more
If you have trouble viewing, visit, click here
Walking and Rett Syndrome
more
If you have trouble viewing, click here.
Gross Motor Skills
more
If you have trouble viewing, click here
Movement Disorders
more
If you have trouble viewing, click here.
Nutrition Strategies in Rett Syndrome
more
If you have trouble viewing, click here.
Common GI Issues in Rett Syndrome
more
If you have trouble viewing, click here.
Alliance Resources
- NORD:
- Rett UK:
- Rett University:
If you see great resources that aren’t listed here, let us know. Email Paige Nues.
To see our full educational line up, including all past RettEd webinars, visit our Education page.
Find more resources near you: state, national, international.
Register today with Rettsyndrome.org.
We’re committed to standing with you during this difficult time. If you find value in these resources and would like to help us serve families in this way, please consider a one-time gift.