Events

Apr
12
Fri
Rett Spectrum 2nd Annual Family Education Symposium
Apr 12 all-day
Apr
13
Sat
Emily’s Dri Tri and Spring Festival @ OTF Smyrna
Apr 13 @ 1:30 pm – 3:30 pm
Apr
27
Sat
Midwest Rett Syndrome Foundation Education Day
Apr 27 all-day
Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic - St. Paul, MN (Regional Association Partner)
Run for Rett @ Busse Woods, Grove #28 Elk Grove, Illinois, (Forest Preserve District of Cook County)
Apr 27 @ 8:00 am – 11:00 am
May
5
Sun
Live Rett Free @ E A Powell Elementary School
May 5 all-day

5K Run, 1 Mile Fun Run & 1 Mile Walk or Stroll


To Benefit Rettsyndrome.org
For more information, please email Live Rett Free. You may also call Amanda at (419) 306-4234 or Karen at (419) 957-3875. Download the Offline Registration Form to register, sponsor or make a donation by check.
May
18
Sat
Philadelphia Ed Day
May 18 all-day
Jun
22
Sat
Rettsyndrome.org Boston Ed Day
Jun 22 all-day
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jul
20
Sat
Rettsyndrome.org Bay Area Ed Day @ Camp Arroyo
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
2
Fri
Northwest Rett Syndrome Foundation Education Day @ Best Western Plus- Hood River Inn
Aug 2 @ 9:00 am – Aug 4 @ 12:00 pm
2019 Family Conference of the Northwest Rett Syndrome Association
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
Oct
5
Sat
Gulf Coast Endurance Ride
Oct 5 @ 1:00 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 @ Wiley Post Park
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
Nov
2
Sat
URMC Rett Syndrome Family Education Day @ University of Rochester Medical Center
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 [email protected]
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
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 [email protected] 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.
Mar
10
Tue
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm
Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel. We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register. 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
Apr
23
Thu
RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
Apr 23 @ 1:00 pm
SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use. Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher. Registration & Information
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 [email protected] or 978-500-2495.
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