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.
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.
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 firstname.lastname@example.org or Jennifer Mosca at email@example.com
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.
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.
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