Events

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
6
Sun
New Jersey Strollathon
Oct 6 @ 10:00 am

11th Annual New Jersey Strollathon

Join us for the 11th Annual New Jersey Strollathon!

Sunday, October 6, 2019
Registration: 10:00am
Stroll: 11:00am
Location: Maxwell Park, Hoboken NJ 07030
Event Chair: Leslie Greenfield (Leslieg417@gmail.com)

Registration & Information

Minnesota Strollathon
Oct 6 @ 1:00 pm

Join us for the 13th Annual Minnesota Strollathon!

Sunday October 6th, 2019
Registration: 1:00pm, Stroll: 2:00pm
Location: Savage Environmental Learning Center
Website :: Directions
Event Chair: Mary Kallstrom (marykallstrom@q.com)

Registration & Information

Oct
19
Sat
San Antonio Strollathon
Oct 19 @ 10:00 am

7th Annual San Antonio Strollathon

Join us for the 7th Annual San Antonio Strollathon!

Saturday October 19th, 2019
Registration: 10:00am, Stroll: 10:30am
Location: San Antonio Aquarium
Website :: Directions
Event Chair: Courtney Bernal

Registration & Information

Tennessee Strollathon
Oct 19 @ 10:00 am

2nd Annual Tennessee Strollathon

Join us for the 2019 Strollathon season!

NEW DATE: Saturday October 19th, 2019
Location: Athens Park, Athens, TN
Registration: 10:00am, Stroll: 11:00am
Event Chair: Sally Teague (sallymteague@yahoo.com)

Registration & Information

Nov
2
Sat
URMC Rett Syndrome Family Education Day
Nov 2 @ 8:00 am

$10 registration fee per family including conference, breakfast and lunch.

Families and caregivers: don’t miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field.

Information & Registration

For more information, email: delmonte.urmc.edu or RettSyndromeFamilyEducation@urmc.rochester.edu

Florida Strollathon
Nov 2 @ 9:00 am

10th Annual Florida Strollathon

Join us for the 2019 Strollathon season!

November 2nd, 2019
Space Field of Dreams, West Melbourne FL
9:00am-1:30pm
Event Contact: Henry Perez (henrymperez@att.net)

Registration

Jan
7
Tue
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm

Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children’s Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University.

We will discuss ¿Qué es el síndrome de Rett?

This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome.

RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.

Register Today

Feb
11
Tue
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm

Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions.

Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego.
Dr. Pichard is Rettsyndrome.org’s Chief Science Officer

Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents.

Register Today