Events

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
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
13
Mon
10th Annual Ella Foard Foundation For Rett Syndrome Charity Golf Classic @ Providence Country Club
May 13 all-day
10th Annual Ella Foard Foundation For Rett Syndrome Charity Golf Classic
May
18
Sat
Philadelphia Ed Day
May 18 all-day
May
21
Tue
14th Annual Samantha Corpus Golf Tournament @ Blackhawk Country Club
May 21 all-day
Other event contact: John Corpus - [email protected]
Jun
1
Sat
Maryland Strollathon @ Cecil Park Community Center
Jun 1 @ 11:00 am – 12:00 pm
Jun
4
Tue
7th Annual Charamella Golf Tournament @ Westover Country Club
Jun 4 @ 11:00 am – 5:00 pm
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. 11:00 AM - 12:00PM Golf Registration & Lunch 12:30 PM Shotgun Start 5:00 PM Doors Open for Dinner * Lunch, 18 Holes of Golf, Driving Range, Tournament T-shirt, Dinner, Prizes, Raffle Table, Silent Auction

Sign up as a foursome or individual

PLAY GOLF All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments and artwork due April 19, 2019. DINNER & SPONSORSHIP
If you can't attend the event you can still make a general donation. DONATE
Jun
22
Sat
Rettsyndrome.org Boston Ed Day
Jun 22 all-day
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jun
28
Fri
Rip it for Rett
Jun 28 @ 7:00 am – 4:00 pm
Join us for a great time supporting a great cause, we hope to see you on June 28, 2019! The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people.
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 @ 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
2
Fri
Northwest Rett Syndrome Foundation Education Day @ Best Western Plus- Hood River Inn
Aug 2 @ 9:00 am – Aug 4 @ 12:00 pm
2019 Family Conference of the Northwest Rett Syndrome Association
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
27
Fri
European Rett Syndrome Conference
Sep 27 all-day
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland  is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Sep
28
Sat
European Rett Syndrome Conference
Sep 28 all-day
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland  is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
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