Events

Jun
28
Fri
Rip it for Rett
Jun 28 @ 7:00 am – 4:00 pm

Join us for a great time supporting a great cause, we hope to see you on June 28, 2019!
The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people.

Jul
20
Sat
Rettsyndrome.org Bay Area Ed Day
Jul 20 all-day

Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Rettsyndrome.org Clinical Research Center of Excellence

Intended for anyone wanting to connect on issues important to Rett syndrome families, especially clinical trial information and emphasis on the enriched environment. Attendees will enjoy a fun camp-style day of discussion and “living education” activities that will cover: research updates, medical and therapeutic interventions, and communication strategies.

WHEN | Saturday, July 20, 2019

WHERE | Camp Arroyo, 5555 Arroyo Road, Livermore, CA 94550

TIME | 9:00a.m. – 4:00p.m. (please arrive at 8:30a.m.)

Fee: $10/per person. Diagnosed children are FREE.

Includes: Presentations, hands-on activities and demonstrations, interactive panel discussion, continental breakfast and lunch. We will have an onsite photographer for family portraits for RSO awareness and education materials. If you choose to participate, photos will be shared with you at no charge.

REGISTER NOW!

 

Aug
17
Sat
Running for Rett Syndrome 5K
Aug 17 @ 8:30 am

RUNNING FOR RETT SYNDROME 5K

Saturday, August 17, 2019
Registration – 8:30am Run Starts – 9:00am
Entry Fee – $20.00
Inquiries – Leah(507)251-4815

Registration & Information

Aug
27
Tue
RettEd: Taking Care of the Caregiver
Aug 27 @ 1:00 pm

Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome.

Our goal is to help you frame an empowered life for yourself today, while we pursue 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.

Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment.

Registration & Information

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
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

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