Events

Mar
1
Sun
Napa Valley 1/2 & Full Marathon
Mar 1 @ 6:00 am

Join us for the Napa Valley Half & Full Marathon!

Ever wanted to run through wine country? Well here is your chance! Rettsyndrome.org has been granted ten charity bibs for the 2020 Napa Valley Half & Full Marathon! We are excited for this new partnership and can’t wait to grow our #RettRacer team! Help to end Rett syndrome while you run through wine country at this Boston qualifier race. Whether you plan to run or want to cheer on our team, please note all of the exciting information below!

Date: Sunday, March 1st, 2020
Location: Napa, California
Website (inclusive of hotel details, routes, etc): https://napavalleymarathon.org/

To participate as a Rett Racer in the Napa Valley Half or Full Marathon, please follow the steps below. *Note: there is a $2500 fundraising requirement for this event*
Runners are responsible for all expenses incurred from race (registration, travel, etc).

  1. Register for the full or half marathon at https://napavalleymarathon.org/
  2. Half marathon Rett code (10% reg discount): RETTHALF2020
  3. Full marathon Rett code (10% reg discount): RETTFULL2020
  4. After registration, please visit Napa Valley team page to create your personal fundraising page.
  5. https://rettracer.everydayhero.com/us/napa-valley-2020-runners
  6. Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
  7. Create & customize your fundraising page and share via social media and email with your contacts.
  8. Contact Jackie Ventura at jventura@rettsyndrome.org to order your Rett Racer t-shirt.

Rettsyndrome.org will have a tent at location TBD where runners can congregate post-race, Rett families can mingle and RSO will be passing out awareness information to spectators!

Please follow this event to stay current on up to date information.

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.

May
4
Mon
Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta 
May 4 @ 2:00 pm – 3:00 pm

Join us Monday, April 27 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the second 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.

May
11
Mon
Communication Intervention, Part 3, feat. Gill Townend & Theresa Bartolotta 
May 11 @ 2:00 pm – 3:00 pm

Join us Monday, May 11 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the third installment of sessions on communication intervention strategies for Rett syndrome.

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.

May
15
Fri
RettEd: Mini Brains in Space – Pushing the Limits of Science
May 15 @ 1:00 pm

SPECIAL DAY: FRIDAY, MAY 15

Award-winning neuroscientist and Rett syndrome expert Dr. Alysson Muotri, Director of the Stem Cell Program at the University of California at San Diego, will share how he and his lab are pushing the limits of science in the name of your child with Rett syndrome.

Dr. Mutori’s lab uses animal models, neural stem cells, human and other primates’ pluripotent cells, and several tools to investigate brain development, evolution, and neural disorders, including Rett syndrome.

Dr. Muotri has received recent headline attention for his experiment to study the impact of microgravity on human brain development, research which could improve disease modeling for neurodegenerative and developmental disorders as well as give clues into the future of humanity in space.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

May
26
Tue
Ideas for modified aquatherapy at home, feat. Briana Czerwinski, PT
May 26 @ 2:00 pm – 3:00 pm

Join us Tuesday, May 26 at 2 p.m. New York time (EDT) with Briana Czerwinski, physical therapist, from the Rett Syndrome Clinic at Kennedy Krieger Institute. Briana will suggest ideas for modified aquatherapy that can be done by you, at home, in your swimming pool, hot jub, jacuzzi tub, bathtub or even a child-size blow-up pool to relax muscles, reduce anxiety, and guide safe movement and stretches for those with Rett syndrome.

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

Jun
6
Sat
Rett Racer Virtual Summer 5K
Jun 6 all-day
Rettsyndrome.org is excited to be hosting a virtual 5k on June 6th. Wherever you are lace up your shoes and hit your local neighborhood, trail (social distancing required) or treadmill and run (or walk!) to end Rett syndrome!
When: Saturday, June 6th, 2020
Where: Anywhere you are!
How: Register by creating an Everyday Hero page with us here.
·       No registration fee, however, fundraising is encouraged.
·       Once $100 has been raised, we will send you a Rett Racer t-shirt.

·       Share your photos on race day in our Facebook event on or on your Everyday Hero page. Use the hashtag #rettracers.

Any questions, please contact Jackie Ventura at Jventura@rettsyndrome.org or 978-500-2495.

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