Events

Jan
8
Tue
Newer Parents: Recommendations for a Healthier Start to Your Unexpected Journey
Jan 8 @ 1:00 pm – 2:30 pm
Topic: Newer Parents: Recommendations for a Healthier Start to Your Unexpected Journey Speaker: Tristen Dinkel, RN, DCH, Paige Nues, Sam Brant Click to View Recording
Feb
12
Tue
Rett Syndrome Research Outlook: 2019 & Beyond
Feb 12 @ 1:00 pm – 2:30 pm
Topic: Rett Syndrome Research Outlook: 2019 & Beyond Speaker: Steve Kaminsky, PhD Click to View Recording
Mar
12
Tue
A Good Night’s Sleep To All
Mar 12 @ 1:00 pm – 2:30 pm
Topic: A Good Night’s Sleep To All Speaker: Dr. Daniel Glaze, TCH, BCM Click to View Recording
Apr
8
Mon
IEP Strategies for Successful Inclusion
Apr 8 @ 1:00 pm – 2:30 pm
Topic: IEP Strategies for Successful Inclusion Speaker: Mickie McCool and Katie Busch Click to View Recording
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
Michigan Strollathon @ Drake Sport Park
May 5 @ 10:00 am – 11:00 am
Registration: 10:00am, Stroll: 11:00am
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 @ 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
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
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
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 @ 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
 
Sep
28
Sat
Cincinnati Strollathon @ Voice of America Park
Sep 28 @ 9:30 am

16th Annual Cincinnati Strollathon

Join us for the 16th Annual Cincinnati Strollathon Date: Saturday, September 28th, 2019 Registration: 9:30am Stroll: 11:00am Location:  Voice of America Park, West Chester OH 45069 Directions :: Website  Event Chairs: Brittney GibsonJim Magato, & Jennifer Magato Registration & Information
Maine Strollathon @ Capitol Park
Sep 28 @ 11:00 am

6th Annual Maine Strollathon

Join us for the 2019 Strollathon season! Saturday September 28th, 2019 Registration: 11:00am, Stroll: 12:30pm Location: Capitol Park, 33 Union Street, Augusta ME 04330 Event Chair: Evie Swan ([email protected]) Registration & Information
Oct
6
Sun
New Jersey Strollathon @ Maxwell Park
Oct 6 @ 10:00 am

11th Annual New Jersey Strollathon

Join us for the 11th Annual New Jersey Strollathon! Sunday, October 6, 2019 Registration: 10:00am Stroll: 11:00am Location: Maxwell Park, Hoboken NJ 07030 Event Chair: Leslie Greenfield ([email protected]) Registration & Information
Minnesota Strollathon @ Savage Environmental Learning Center
Oct 6 @ 1:00 pm
Join us for the 13th Annual Minnesota Strollathon! Sunday October 6th, 2019 Registration: 1:00pm, Stroll: 2:00pm Location: Savage Environmental Learning Center Website :: Directions Event Chair: Mary Kallstrom ([email protected]) Registration & Information
Oct
15
Tue
RettEd: Newly Published Communication Guidelines for Rett
Oct 15 @ 1:00 pm

Newly Published Communication Guidelines for Rett

Tuesday, October 15, 2019 1:00pm Webinar Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts. Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards 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. Registration & Information
Oct
19
Sat
San Antonio Strollathon @ San Antonio Aquarium
Oct 19 @ 10:00 am

7th Annual San Antonio Strollathon

Join us for the 7th Annual San Antonio Strollathon! Saturday October 19th, 2019 Registration: 10:00am, Stroll: 10:30am Location: San Antonio Aquarium Website :: Directions Event Chair: Courtney Bernal Registration & Information
Tennessee Strollathon @ Athens Park
Oct 19 @ 10:00 am

2nd Annual Tennessee Strollathon

Join us for the 2019 Strollathon season! NEW DATE: Saturday October 19th, 2019 Location: Athens Park, Athens, TN Registration: 10:00am, Stroll: 11:00am Event Chair: Sally Teague ([email protected]) Registration & Information
Nov
2
Sat
Florida Strollathon @ Space Field of Dreams
Nov 2 @ 9:00 am

10th Annual Florida Strollathon

Join us for the 2019 Strollathon season! November 2nd, 2019 Space Field of Dreams, West Melbourne FL 9:00am-1:30pm Event Contact: Henry Perez ([email protected]) Registration
Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm
Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about it. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children's Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020. This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Apr
9
Thu
At-Home Moves and Stretches for Tweens & their Caregivers, feat. Meir Lotan @ Facebook Live
Apr 9 @ 11:00 am – 12:00 pm
Join us April 9 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with 4 U.S. families. Meir will work with their children who are between 8 and 13, with a range of abilities, using what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home. All live sessions will be posted on YouTube after the training.
Apr
16
Thu
At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan @ Facebook Live
Apr 16 @ 11:00 am – 12:00 pm
Join us April 16 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with Rett families. Meir will work with their adult children who have a range of abilities. He will use what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home. All live sessions will be posted on YouTube after the training.