Dec
11
Tue
Topic: Siblings Unique Concerns, Unique Opportunities Speaker: Emily Holl, Director, Sibling Support Project Click to View Video
Categories: Previous Webinars
Apr
12
Fri
Categories: Ed Day Education Slider
Apr
27
Sat
Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic - St. Paul, MN (Regional Association Partner)
Categories: Ed Day Education Slider
May
4
Sat
Registration: 9:00am, Stroll: 10:00am Event Chairs: Joyce Opinsky & Amy Kreher
Categories: Special Events - Strollathons
Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer
Categories: Special Events - Strollathons
May
5
Sun
Registration: 10:00am, Stroll: 11:00am
Categories: Special Events - Strollathons
May
18
Sat
Categories: Ed Day Education Slider
Jun
1
Sat
Categories: Special Events - Strollathons
Jun
11
Tue
Topic: Nutrition Strategies for Rett Syndrome Speaker: Suzanne Geerts, MS, RD, LD UAB Register
Categories: Previous Webinars Webinar
Jun
22
Sat
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jul
20
Sat
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
31
Sat
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
Categories: Special Events - Strollathons
Sep
7
Sat
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
Categories: Special Events - Strollathons
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
Categories: Special Events - Strollathons
Sep
22
Sun
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
Categories: Special Events - Strollathons
Sep
28
Sat
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 Gibson, Jim Magato, & Jennifer Magato Registration & Information
Categories: Special Events - Strollathons
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
Categories: Special Events - Strollathons
Oct
6
Sun
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
Categories: Special Events - Strollathons
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
Categories: Special Events - Strollathons
Oct
19
Sat
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
Categories: Special Events - Strollathons
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
Categories: Special Events - Strollathons
Nov
2
Sat
Nov 2 @ 8:00 am
$10 registration fee per family including conference, breakfast and lunch. Families and caregivers: don't miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field. Information & Registration For more information, email: delmonte.urmc.edu or [email protected]
Categories: Ed Day Education Slider
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
Categories: Special Events - Strollathons
Jan
7
Tue
Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children's Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University. We will discuss ¿Qué es el síndrome de Rett? This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Categories: Ed Day Education Slider
Feb
11
Tue
Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions. Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego. Dr. Pichard is Rettsyndrome.org's Chief Science Officer Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents. Register Today
Categories: Ed Day Education Slider
Mar
10
Tue
Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel. We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register. 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
Categories: Ed Day Education Slider
Apr
23
Thu
Apr 23 @ 1:00 pm
SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use. Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher. Registration & Information
Categories: Ed Day Education Slider
May
2
Sat
4th Annual Iowa Strollathon
Saturday, May 2th, 2020 Time: 11:00am-2:00pm Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021 Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer ([email protected]) Website: www.iowa.strollathon.org FB event: https://www.facebook.com/events/944620542600601/ Categories: Special Events - Strollathons
13th Annual St Louis Strollathon
Saturday, May 2th, 2020 Registration: 9:00am, Stroll: 10:00am Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146 Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Website: www.st-louis.strollathon.org FB event: https://www.facebook.com/events/481490805883829/ Categories: Special Events - Strollathons
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