Events

May
11
Sat
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

Jun
1
Sat
Maryland Strollathon
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

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

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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
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 (christina.dean13@yahoo.com) & Jennifer Langzettel (langzettelj@duq.edu)

Registration & Information

Sep
7
Sat
Chicago Strollathon & Picnic
Sep 7 @ 11:00 am

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 (gruenesmisty@gmail.com)

Visit the Event page

Nebraska Strollathon
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
10
Tue
RettEd: 2019 Research Update 20 Years Since the MECP2 Gene Discovery feat. Huda Y. Zoghbi, M.D.
Sep 10 @ 1:00 pm

Please join us Tuesday, September 10th at 1:00 pm eastern with Huda Y. Zoghbi, M.D., Director, Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital; Baylor College of Medicine as we journey from discovery of the Rett syndrome disease-causing MECP2 gene to where that discovery and subsequent learnings have taken us to today.

This live webinar is intended to provide hope and inspiration to caregivers and families. Our goal is to help you frame our collective Hope for better treatments and ultimately a cure for Rett syndrome while empowering you with strategies in the here and now. 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 webinar topics, and to access recording links from past webinars 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

Sep
22
Sun
Portland Strollathon
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