Events

Jan
30
Tue
“What is Rett Syndrome?”… the Diagnosis, the Symptoms, the Natural History, and Best Care Interventions Today
Jan 30 @ 1:00 pm – 2:30 pm
Topic: "What is Rett Syndrome?"... the Diagnosis, the Symptoms, the Natural History, and Best Care Interventions Today Speaker: Alan Percy, MD, UAB  Click to View Video  Read the Q&A
Feb
13
Tue
Respiratory Issues in Rett Syndrome, esp during cold and flu season
Feb 13 @ 1:00 pm – 2:30 pm
Topic: Respiratory Issues in Rett Syndrome, esp during cold and flu season Speaker: Marianna Sockrider, MD, DrPH, AE-C, TCH Click to View Video Read the Q&A
Mar
13
Tue
Puberty and Adulthood: Information for moms, dads, everyone!
Mar 13 @ 1:00 pm – 2:30 pm
Topic: Puberty and Adulthood: Information for moms, dads, everyone! Speaker: Jane Lane, RN, UAB Click to View Video Audience questions are all addressed by our Speaker within the recording
Apr
10
Tue
Common GI Issues in Rett syndrome, How to Intervene and Clinical Research Outlook
Apr 10 @ 1:00 pm – 2:30 pm
Topic: Common GI Issues in Rett syndrome, How to Intervene and Clinical Research Outlook Speaker: Dr. K Motil, BCM, Texas Children's Hospital Click to View Video Audience questions are all addressed by our Speaker within the recording
May
8
Tue
IEP: Strategies for Rett Success
May 8 @ 1:00 pm – 2:30 pm
Topic: IEP: Strategies for Rett Success Speaker: Valerie Owen, PhD Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Jul
10
Tue
Communication- Making it Count
Jul 10 @ 1:00 pm – 2:30 pm
Topic: Communication- Making it Count Speaker: Judy Lariviere, M.Ed.,OTR/L, UCSF Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Aug
7
Tue
U.S.-Russia Rett syndrome Cultural Exchange
Aug 7 @ 1:00 pm – 2:30 pm
Topic: U.S.-Russia Rett syndrome Cultural Exchange Speaker: Olga Timutsa, President, Rett Syndrome Association of Russia, Mother to Katerina Olga Timutsa will be visiting the U.S. as a guest of Rettsyndrome.org for a cultural exchange focused on diagnosis, care, and life for children and adults with Rett syndrome and their families. Hear Olga share about life in Russia with Rett syndrome and how our research and efforts have a global impact. Click Here to View Video
Aug
14
Tue
Understanding Autonomic Dysfunction in Rett Syndrome
Aug 14 @ 1:00 pm – 2:30 pm
Topic: Understanding Autonomic Dysfunction in Rett Syndrome Speaker: Jeff Neul, MD, PhD, Vanderbilt University Click to View Video (you will be prompted to submit a registration form to view the video) Audience questions are all addressed by our Speaker within the recording
Sep
11
Tue
Epilepsy: Incidence, Treatments & Research
Sep 11 @ 1:00 pm – 2:30 pm
Topic: Epilepsy: Incidence, Treatments & Research Speaker: Eric Marsch, MD, PhD, CHOP Click to View Video Read the Q&A
Oct
9
Tue
Planning for a Protected Tomorrow with Special Update on ABLE Accounts
Oct 9 @ 1:00 pm – 2:30 pm
Topic: Planning for a Protected Tomorrow with Special Update on ABLE Accounts Speaker: Mary Anne Ehlert, CFP, Protected Tomorrows, Inc Click to View Video  Read the Q&A
Nov
13
Tue
Gross Motor Skills, benefits of Environmental Enrichment
Nov 13 @ 1:00 pm – 2:30 pm
Topic: Gross Motor Skills, benefits of Environmental Enrichment Speaker: Jenny Downs, PhD Telethon Kids Institute, AU Click to View video
Dec
11
Tue
Siblings Unique Concerns, Unique Opportunities
Dec 11 @ 1:00 pm – 2:30 pm
Topic: Siblings Unique Concerns, Unique Opportunities Speaker: Emily Holl, Director, Sibling Support Project Click to View Video
Apr
13
Sat
Emily’s Dri Tri and Spring Festival @ OTF Smyrna
Apr 13 @ 1:30 pm – 3:30 pm
Apr
27
Sat
Run for Rett @ Busse Woods, Grove #28 Elk Grove, Illinois, (Forest Preserve District of Cook County)
Apr 27 @ 8:00 am – 11:00 am
May
4
Sat
St. Louis Strollathon @ JCC,2
May 4 @ 9:00 am – 10:00 am
Registration: 9:00am, Stroll: 10:00am Event Chairs: Joyce Opinsky & Amy Kreher
3rd Annual Iowa Strollathon @ Kinzler Construction
May 4 @ 11:00 am – 2:00 pm
Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer
May
5
Sun
Live Rett Free @ E A Powell Elementary School
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.
Michigan Strollathon @ Drake Sport Park
May 5 @ 10:00 am – 11:00 am
Registration: 10:00am, Stroll: 11:00am
May
11
Sat
RettEd: Adulthood: Living and Lifestyle options Saturday: Special Day/Time
May 11 all-day
Jun
1
Sat
Maryland Strollathon @ Cecil Park Community Center
Jun 1 @ 11:00 am – 12:00 pm
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
20
Sat
Rettsyndrome.org Bay Area Ed Day @ Camp Arroyo
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
Aug
31
Sat
Pennsylvania Strollathon @ Millvale Riverfront Park
Aug 31 @ 9:00 am

6th Annual Pennsylvania Strollathon

Join us for the 6th Annual Pennsylvania Strollathon Saturday August 31st, 2019 Registration: 9:00am, Stroll: 10:15am Location: Millvale Riverfront Park, Millvale PA? Directions :: Website  Event Chair: Christina Dean ([email protected]) & Jennifer Langzettel ([email protected]) Registration & Information
Sep
7
Sat
Chicago Strollathon & Picnic @ Kankanee State Park
Sep 7 @ 12:00 pm

13th Annual Chicago Strollathon

Join us for the 13th Annual Chicago Strollathon! Saturday September 7th, 2019 When: 11:00am Location: Kankanee State Park Map ll Directions Event Chair: Misty Gruenes ([email protected]) Visit the Event page
Nebraska Strollathon @ Yanney Park
Sep 7 @ 1:00 pm

8th Annual Nebraska Strollathon

Join us for the 8th Annual Nebraska Strollathon Saturday, September 7th 2019 Registration: 1:00pm, Stroll: 2:00pm Location: Yanney Park, 2020 W 11th St, Kearney, NE 68845 Rotary Shelter by the Splash pad Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion Registration & Information
Sep
22
Sun
Portland Strollathon @ Rose Quarter
Sep 22 @ 1:00 pm

14th Annual Portland Strollathon

Join us for the 14th Annual Portland Strollathon Sunday, September 22nd Registration: 1:00pm, Stroll: 2:30pm Location: Rose Quarter, Portland OR Directions :: Website Event Chair: Lacey & Leigh Calvert  Registration & Information