Events

Nov
9
Sat
Reach for a Cure: Houston
Nov 9 @ 6:00 pm

Be a part of our Inaugural Boots & Bling Rett Gala!

Saturday, November 9th, 2019

Firehouse Saloon
5930 Southwest Freeway, Houston, TX 77057

6:00 p.m. VIP reception for Rett Families & Sponsors
6:30 p.m. Doors open to public

We’re excited to invite you to Houston’s very first Reach for a Cure – Boots & Bling Rett Gala benefitting Rettsyndrome.org. This entertaining event is designed to raise funds for a cure for Rett syndrome while having lots of fun at the same time.

Get dolled up, but don’t forget your boots! This honky-tonk is going to rattle with special musical guests Coleton Black,  Chubby Knuckle Choir and Pauline Reese. We’ll also have a live and silent auction full of great items – perfect time to get holiday gifts, or something for yourself!

Registration & Sponsorship

View Sponsorship Opportunities

All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.

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

Nov
15
Fri
Find a Cure: Pop-up Event
Nov 15 @ 6:00 pm

Find a Cure

a one night pop-up event with art by Cecily Miniaci

Date: November 15, 2019
Time: 6-9PM
Location: 701 Broadway Blvd, Kansas City, MO

Local Kansas City artist, Cecily Miniaci, will be doing a pop up art event downtown at Roasters Block on November 15th from 6-9pm with a portion of the proceeds benefiting rettsyndrome.org.

Information & Registration

Dec
7
Sat
Hannah’s Art Show
Dec 7 @ 2:00 pm

Hannah’s Art Show

Save the Date for Hannah’s Art Show. There will be note cards, prints, and original paintings for sale to benefit Rettsyndrome.org.

Date: December 7, 2019
Time: 2-4pm
Location: Four Corners Framing Gallery

Contact Information: Trisha Carpenter
Email: tpcarpenter503@yahoo.com

Jan
25
Sat
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield
Jan 25 @ 4:00 pm

Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield

Date: Saturday, January 25th, 2020
Time: 4:00pm

The People’s United Center at Quinnipiac, 305 Sherman Ave, Hamden, CT 06518
MAAC Tournament Kick Off, Rett Syndrome Awareness, Camper Reunion Day

Information & Registration

For Questions please contact Nicole McAmis at nicole.mcamis@quinnipiac.edu

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.