Events

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
May
2
Sat
4th Annual Iowa Virtual Strollathon
May 2 @ 9:00 am

4th Annual Iowa Strollathon

Saturday, May 2th, 2020 Time: 11:00am-2:00pm Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021 Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer ([email protected]) Website: www.iowa.strollathon.org FB event: https://www.facebook.com/events/944620542600601/
Postponed: 13th Annual St Louis Strollathon
May 2 @ 9:00 am

13th Annual St Louis Strollathon

Saturday, May 2th, 2020 Registration: 9:00am, Stroll: 10:00am Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146 Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Website: www.st-louis.strollathon.org FB event: https://www.facebook.com/events/481490805883829/
May
17
Sun
12th Annual Michigan Strollathon
May 17 @ 9:00 am
12th Annual Michigan Strollathon Date: Sunday, May 17, 2020 Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322 Registration: 10:00am, Stroll: 11:00am Event Chair: Lisa Fenberg ([email protected]) Website: www.michigan.strollathon.org FB event: https://www.facebook.com/events/233787530951786/
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.
LEARN MORE
Jul
26
Sun
9th Annual Scramble for a Cure @ The Chief Golf Course
Jul 26 @ 8:30 am

9th Annual Scramble for a Cure

Date: Sat July 26th 2020 Cost: $300/Team Location: The Chief Golf Course, Bellaire MI Contact: Sue Knight (231) 495-9794 or [email protected] https://www.golfthechief.com/ Information & Registration
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
Sep
12
Sat
9th Annual Nebraska Strollathon: Virtual Edition
Sep 12 @ 9:00 am

9th Annual Nebraska Strollathon - Virtual Edition

Join Us for the 9th Annual Nebraska Strollathon At Rettsyndrome.org, the health & well being our of community is of utmost importance. Due to the Covid-19 pandemic, we have decided to host this year's Stroll VIRTUALLY! We have some tricks up our sleeve to make it a fun & engaging experience! Saturday, September 12th 2020 Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion Information & Registration
Sep
19
Sat
Run For Rett 2020 – Virtual
Sep 19 all-day
WHEN: Saturday, September 19, 2020 LOCATION: Busse Woods, Grove 28 Elk Grove Village, IL Contact info: Diane Ross ([email protected]). From the serious runner to the recreational runner, to family members and friends of all ages the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett Syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run. Information & Registration Facebook Event
Sep
20
Sun
15th Annual Portland Strollathon
Sep 20 all-day
  Join us for the 15th Annual Portland Strollathon: Virtual Edition! After thoughtful consideration, we have decided to go VIRTUAL for the Portland Stroll! Sunday, September 20th: any time! Stroll at your leisure through your neighborhood, local park or hop on the treadmill! Follow us on Facebook for event updates, contests and more! Event Chair: Lacey & Leigh Calvert Information & Registration
Sep
26
Sat
17th Annual Cincinnati Strollathon: Virtual Edition
Sep 26 @ 9:00 am

17th Annual Cincinnati Strollathon: Virtual Edition

Join us for the 17th Annual Cincinnati Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Be sure to follow us on Facebook to stay up to date on our fun virtual activities: facebook.com/Cincinnati-Tri-State-Strollathon Date: September, 26th, 2020 Location: your neighborhood, walking trail or treadmill! Event Chairs: Brittney Gibson, Jim Magato, & Jennifer Magato Information & Registration
Oct
3
Sat
Rett Gets Rocked Ultramarathon
Oct 3 @ 12:00 pm – Oct 4 @ 8:00 pm

Rett Gets Rocked Ultramarathon

A weekend in which participants complete an ultra marathon of their choosing--from 50K to 100 miles, or from 6 to 48 hours. They can stretch their event over the month of October if desired. Proceeds from the event go to Rettsyndrome.org and the Rett Spectrum Clinic at St. Louis Children's Hospital! Register for RGRVUW by purchasing a race shirt! REGISTER Jay Murry will be doing his ultra-marathon in his local sub-division, the Vineyards. The Rett Gets Rocked headquarters will be located at: 756 Napa Lane, St. Charles MO 63304 on Sat 10/3 from 12pm- Sun 10/4 at 8pm. To donate to Jay, please click here. To follow along on Facebook, visit: https://www.facebook.com/24hourjaymurry/ For more information, contact Jay at [email protected]
Oct
4
Sun
14th Annual Minnesota Virtual Strollathon
Oct 4 @ 9:00 am

14th Annual Minnesota Virtual Strollathon

Join us for the 14th Annual Minnesota Virtual Strollathon!
  • Sunday October 4th, 2020
  • Location: Virtual
  • Event Chair: Mary Kallstrom ([email protected])
Information & Registration
New Jersey Strollathon
Oct 4 @ 10:00 am

Join us for the 12th Annual New Jersey Strollathon- VIRTUALLY!

At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the Covid-19 pandemic, we will be going Virtual this year! We have some tricks up our sleeve to make this a fun & engaging event. Date: Sunday, October 4th, 2020 Location: Your neighborhood, local walking trail or treadmill! Follow us on Facebook for contests, event updates and more! Event Chair: Leslie Greenfield ([email protected]) Information & Registration
Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress. 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
Oct
17
Sat
13th Annual St. Louis Virtual Strollathon
Oct 17 @ 9:00 am

13th Annual St. Louis Virtual Strollathon

Dates: Saturday, October 17, 2020 Location: Virtual Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Information & Registration
7th Annual Raleigh Strollathon: Virtual Edition
Oct 17 @ 10:00 am

7th Annual Raleigh Strollathon: Virtual Edition

Join us for the 7th Annual Raleigh Strollathon VIRTUALLY! Please join us on Saturday, October 17th at 11am EST on Facebook for our 'virtual' event. Be sure to wear your past or present Stroll apparel and share photos on our FB page. Follow our Facebook page for more info, contests and more! Facebook page: https://www.facebook.com/NCIRSFStrollRaleigh/ Questions? Contact: Gwen Noecker ([email protected]) or (919) 426-5554. Information & Registration
Oct
24
Sat
18th Annual SoCal Virtual Picnic & Strollathon
Oct 24 all-day

18th Annual SoCal Virtual Picnic & Strollathon

Join us for the 18th Annual SoCal Picnic & Strollathon - Virtual Edition!
  • Date: October, 24th, 2020
  • Location: Virtual
  • Event Contact: Sherri Brady (562-619-0109 or [email protected])
Information & Registration
1st Annual South Carolina Virtual Strollathon
Oct 24 all-day

1st Annual South Carolina Virtual Strollathon

Join us for the 1st Annual South Carolina Virtual Strollathon! Information & Registration
Oct
31
Sat
11th Annual Florida Strollathon: Virtual Edition
Oct 31 @ 9:00 am

11th Annual Florida Strollathon: Virtual Edition

Join us for the 11th Annual Florida Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Date: October, 31st, 2020 Location: your neighborhood, walking trial or treadmill! Event Contact: Jackie Ventura (978-500-2495 or [email protected]) Information & Registration
7th Annual Maine Strollathon: Virtual Edition
Oct 31 @ 9:00 am

7th Annual Maine Strollathon: Virtual Edition

Join us for the 7th Annual Maine Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Date: October 31, 2020 Location: your neighborhood, walking trial or treadmill! Stroll Chair: Evie Swan (775-200-8788 or [email protected]) Information & Registration
Nov
7
Sat
8th Annual San Antonio Virtual Strollathon
Nov 7 all-day

8th Annual San Antonio Virtual Strollathon

Join us for the 8th Annual San Antonio Virtual Strollathon!
  • Saturday November 7th, 2020
  • Location: Virtual
  • Event Chair: Ashley Cotham
Information & Registration
Nov
15
Sun
Rett Education 2020, Online Conference
Nov 15 – Nov 21 all-day

Rett Education 2020

Communicate, Educate, Advocate 7-day online conference with international expert speakers Date: November 15-21, 2020 Details: Unlike physical conferences where you can end up sitting through content you just don't need, Rett Education 2020 – Communicate, Educate, Advocate is delivered entirely online. Dip in and watch the specific talks you want or catch them all. It’s up to you! All talks will be available to watch again or watch later, as long as you have registered. REGISTRATION & INFORMATION
Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information? Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.  
May
6
Thu
Rotary Club of Indialantic – Charity Golf Tournament @ Spessard Holland at Melbourne Beach
May 6 @ 9:00 am

Rotary Club of Indialantic - Charity Golf Tournament

Charity Golf Tournament & virtual Gala in support of Rettsyndrome.org. 40% of all proceeds go to Rettsyndrome.org Date: Saturday, May 22, 2021 Course: Spessard Holland at Melbourne Beach Information & Registration
May
8
Sat
Run for Rett
May 8 – May 16 all-day

Run for Rett

WE ARE GOING VIRTUAL AGAIN!!!

When: Saturday, May 8th - Sunday, May 16th Where: Any time and any place Our responsibility is to the health and well being of our participants and volunteers for the Run For Rett. The decision to change to a virtual event was thoughtfully made with extreme concern for our entire Rett syndrome community and our dedicated participants and volunteers. Thank you for your understanding, cooperation and support. How you participate is totally up to you. You can run the 5K, walk a mile or sit in your recliner. No matter what you choose you are a winner because you are making a difference in the lives of those impacted by Rett syndrome. We encourage you to register online. It’s easy to register at Raceroster.com/46429 Follow us on Facebook: Click here - Run Rett 2021
May
10
Mon
8th Annual Charamella Golf Tournament @ Westover Golf Club
May 10 @ 11:00 am
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. To learn more, you may view the brochure here. Join us on Monday, May 10th, 2021 Due to the Covid-19 pandemic, we will be following the CDC guidelines inclusive of masks & social distancing. 11 – 12pm: Golf registration & Lunch 12:30pm: Shotgun Start 5pm: Tailgate, food truck

SIGN UP AS A FOURSOME OR INDIVIDUAL

Registration/Dinner All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments & artwork must be received by May 3rd. Sponsorship If you can’t attend the event you can still make a general donation. Donate
Jun
5
Sat
RETT RACERS VIRTUAL SUMMER 5K
Jun 5 @ 10:00 am

The 2nd Annual Summer Virtual 5K is Back!

Date: June 5, 2021 Join our community around the world by lacing up your shoes and hitting your local neighborhood, trail (social distancing required), or treadmill. Run, walk, skip, or stroll to end Rett syndrome! No registration fee; however, fundraising is encouraged. Once $200 has been raised, we will send you a Rett Racer t-shirt. Share your photos on race day to our Facebook event or your personal fundraising page! Use the hashtag #rettracers. Information & Registration