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).
- Register for the full or half marathon at https://napavalleymarathon.org/
- Half marathon Rett code (10% reg discount): RETTHALF2020
- Full marathon Rett code (10% reg discount): RETTFULL2020
- After registration, please visit Napa Valley team page to create your personal fundraising page.
- Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
- Create & customize your fundraising page and share via social media and email with your contacts.
- Contact Jackie Ventura at email@example.com 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.
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.
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.
4th Annual Iowa Strollathon
Saturday, May 2th, 2020
Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021
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
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
· Share your photos on race day in our Facebook event on or on your Everyday Hero page. Use the hashtag #rettracers.
Postponed-East Coast Rettsyndrome.org Ed Day
Due to COVID-19, this event has been postpone.
Baltimore, MD (in partnership with Kennedy Krieger Institute )
Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.
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
WHEN: Saturday, September 19, 2020
LOCATION: Busse Woods, Grove 28
Elk Grove Village, IL
Contact info: Diane Ross (firstname.lastname@example.org).
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.