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
18
Sat
Sesame Place Dinner & Park @ Sesame Place
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 [email protected] or with questions to Erin Cassano (local Rett parent) [email protected]  
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
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
27
Tue
RettEd: Taking Care of the Caregiver
Aug 27 @ 1:00 pm
Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome. Our goal is to help you frame an empowered life for yourself today, while we pursue our collective Hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment. 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