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
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

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.

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 Jventura@rettsyndrome.org or 978-500-2495.

LEARN MORE

Jun
18
Thu
RettGetAway – Postponed
Jun 18 @ 12:00 am – Jun 21 @ 12:00 am

RettGetAway: Postponed

After much consideration, our RettGetAway committee has decided to postpone the June 2020 RettGetAway in San Diego. The health of our children is of utmost concern. Once it is deemed safe and sound to convene large groups in public spaces again, we will evaluate a future Rett GetAway.

Many were working to create this ‘life without limits’ opportunity. A special thanks to the Kayla Mosca Foundation, Surfing Madonna, Surfin’ Fire, Merlin’s Magic Wand in association with Legoland San Diego, The Cassara Carlsbad by Hilton, our CA State Rep Sherri Brady, and ACADIA Pharmaceuticals.

We hope that all of our families and partners emerge from this situation whole, intact, and able to plan an even more extraordinary RettGetAway!

If you have made any travel bookings for the RettGetAway, we advise you to cancel them now while forgivable and with no penalty.

Rettsyndrome.org will be returning the group Legoland tickets awarded by Merlin’s Magic Wand so that a future award can be made again to either our group or to individuals who may choose to apply at another time (they only allow one Magical Day Out per family, one time)

We appreciate your understanding, and we hope that you all stay healthy and safe.
Please direct any questions to Paige Nues at pnues@rettsyndrome.org or Jennifer Mosca at info@thekaylamoscafoundation.org

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Aug
11
Tue
RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
Aug 11 @ 1:00 pm

Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome.

Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons’ areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration