Events

Sep
27
Fri
European Rett Syndrome Conference
Sep 27 all-day

The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems.

The purpose of Rett Finland  is to support families with Rett’s syndrome diagnosed child. The Association has about 100 members. For more information on the association’s activities, visit the association’s website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland

Registration & Information

Sep
28
Sat
European Rett Syndrome Conference
Sep 28 all-day

The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems.

The purpose of Rett Finland  is to support families with Rett’s syndrome diagnosed child. The Association has about 100 members. For more information on the association’s activities, visit the association’s website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland

Registration & Information

Oct
5
Sat
Gulf Coast Endurance Ride
Oct 5 @ 12:00 am

RRAA 2018 Launch

Gulf Coast Endurance Ride

Saturday, October 5th from Biloxi MS to Pensacola FL.

If you’re up for a challenging ride, consider joining KC Byers and friends for a century ride. KC is the creator of the Rett Ride Across America and step-dad to Katelyn with Rett. Last year he completed his second 2,600 mile ride across the country. Here are the details for this year’s Endurance Ride:
Start: Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530
Finish: WEAR TV, 4990 Mobile Highway, Pensacola FL 32506
114 mile with volunteer sag support & police escorts

Join for any length of the ride. Here are the multiple lag points where you can join.

Lag Point #1 (120 Miles): Meet at Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530
Lag Point #2 (90 miles): Meet at US Hwy 90 at the Missippi/Alabama line
Lag Point #3 (70 miles): Meet at Raceway 6709, 5455 Government Bvld, Mobile AL 36619 (Theodore exit junction I-10 and US 90)
Lag Point #4 (45 miles): Meet at Eastern Shore Bike Shop, 845 US-90 Ste 102, Daphne, AL 36526
Lag Point #5 (20 miles): Maw Maw’s Country Market, 26010 US Hwy 90, Robertsdale, AL Junction 90 & 87
END at: WEAR Channel 3, 4990 Mobile Hwy, Pensacola Fl
Ride in style with your RRAA gear- select a jersey, cycle shorts or both. Shop here.

Register TODAY!

OKC River Run
Oct 5 @ 8:00 am

OKC River Run

The goal of the OKC River Run is to raise support and awareness for Rett Syndrome, which is a genetic disorder that affects mainly girls and severely impairs “nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily.” The need for research is critical.

The OKC River Run is a USATF sanctioned and certified course along the picturesque Oklahoma River that provides a smooth, level, paved trail through downtown Oklahoma City free of vehicle traffic.

  • 6:30 a.m. to 8:30 a.m. – Packet Pick Up and onsite Registration.
  • 8:00 am. – Half Marathon* Start
  • 8:50 a.m. – 5K Start
  • 9:00 a.m. – 10K Start
  • 9:00 -11:00 a.m. – Awards Ceremony *See Details
All races will use chip timing for official race results.
All courses are USATF certified.

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

Oct
24
Thu
Rett Syndrome Ed Day: Communication and Literacy for Individuals with Complex Communication Needs
Oct 24 @ 9:00 am

WHEN | Thursday, October 24th, 2019
TIME | 9:00am
WHERE | Monmouth University: Directions | Website

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

Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm

Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children’s Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020.

This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did 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 Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

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.