Events

Apr
27
Sat
Run for Rett
Apr 27 @ 8:00 am – 11:00 am
May
5
Sun
Live Rett Free
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
11
Sat
RettEd: Adulthood: Living and Lifestyle options Saturday: Special Day/Time
May 11 all-day
Adulthood: Living and Lifestyle Options
May 11 @ 1:00 pm – 2:30 pm

Speakers: Jenny Downs, PhD, Michelle Stahlhut, PT, PhD, Theresa Bartolotta, PhD, Donna Witzleben
Special Day/Time : Saturday, 11:00 AM EST

Register

May
18
Sat
Sesame Place Dinner & Park
May 18 – May 19 all-day
Sesame Place Dinner & Park @ Sesame Place

Enjoy an accessible family friendly park for 2 days with a private dinner on Saturday. Tickets are $50/person; this is at least a $70 savings! Plan your Accessible Seasame Place Day!


Dinner:

Date: Saturday, May 18
Time: 6:00 – 7:00 pm
Where: Abby’s Garden Grille
After 5:30 pm parking is free

Tickets must be pre-purchased by Wednesday, May 8th 2019 and are non-refundable.

Tickets include: Private after-hours dinner with a Sesame character appearance, and 2-day park passes to be used on Saturday, May 18th and Sunday, May 19th.

The park is less than a mile away from the Rett Ed Day at Sheraton Bucks County. Parking at Sesame Place is $27 or $23 based on the lot. The Sheraton offers free parking and free non-ADA shuttle.

For more information contact Paige Nues pnues@rettsyndrome.org or with questions to Erin Cassano (local Rett parent) erin.cassano@gmail.com

 

Jun
11
Tue
Nutrition Strategies for Rett Syndrome
Jun 11 @ 1:00 pm – 2:30 pm

Topic: Nutrition Strategies for Rett Syndrome
Speaker: Suzanne Geerts, MS, RD, LD UAB

Register

Jun
22
Sat
Rettsyndrome.org Boston Ed Day
Jun 22 all-day

Rettsyndrome.org Ed Day hosted by TBD – Boston, MA

Jul
9
Tue
Genetics of Rett Syndrome and MECP2
Jul 9 @ 1:00 pm – 2:30 pm

Topic: Genetics of Rett Syndrome and the MECP2 Gene
Speakers: Steve Skinner, MD and Hannah Warren, LMSW

Register

Jul
20
Sat
Rettsyndrome.org Bay Area Ed Day
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
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