Events

May
2
Sat
Postponed: 13th Annual St Louis Strollathon
May 2 @ 9:00 am

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/
May
4
Mon
Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
May 4 @ 2:00 pm – 3:00 pm
Join us Monday, April 27 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the second of two sessions on Communication interventions. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
May
11
Mon
Communication Intervention, Part 3, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
May 11 @ 2:00 pm – 3:00 pm
Join us Monday, May 11 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the third installment of sessions on communication intervention strategies for Rett syndrome. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
May
15
Fri
RettEd: Mini Brains in Space – Pushing the Limits of Science
May 15 @ 1:00 pm
SPECIAL DAY: FRIDAY, MAY 15 Award-winning neuroscientist and Rett syndrome expert Dr. Alysson Muotri, Director of the Stem Cell Program at the University of California at San Diego, will share how he and his lab are pushing the limits of science in the name of your child with Rett syndrome. Dr. Mutori's lab uses animal models, neural stem cells, human and other primates’ pluripotent cells, and several tools to investigate brain development, evolution, and neural disorders, including Rett syndrome. Dr. Muotri has received recent headline attention for his experiment to study the impact of microgravity on human brain development, research which could improve disease modeling for neurodegenerative and developmental disorders as well as give clues into the future of humanity in space. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
May
17
Sun
12th Annual Michigan Strollathon
May 17 @ 9:00 am
12th Annual Michigan Strollathon Date: Sunday, May 17, 2020 Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322 Registration: 10:00am, Stroll: 11:00am Event Chair: Lisa Fenberg ([email protected]) Website: www.michigan.strollathon.org FB event: https://www.facebook.com/events/233787530951786/
May
26
Tue
Ideas for modified aquatherapy at home, feat. Briana Czerwinski, PT @ Facebook Live
May 26 @ 2:00 pm – 3:00 pm
Join us Tuesday, May 26 at 2 p.m. New York time (EDT) with Briana Czerwinski, physical therapist, from the Rett Syndrome Clinic at Kennedy Krieger Institute. Briana will suggest ideas for modified aquatherapy that can be done by you, at home, in your swimming pool, hot jub, jacuzzi tub, bathtub or even a child-size blow-up pool to relax muscles, reduce anxiety, and guide safe movement and stretches for those with Rett syndrome. All live sessions will be posted on YouTube after the training.
Jun
9
Tue
Facebook Live Chat: Current State of Rett Syndrome Research
Jun 9 @ 1:00 pm
Join us on Facebook Live to hear from our Chief Science Officer, Dr. Dominique Pichard. She will speak to the current state of Rett syndrome research, clinical trials, and how researchers are continuing their work during COVID-19 to help us create a world without Rett. Like us on Facebook and mark your calendars to tune in.
Jul
15
Wed
RettEd: Longevity in Rett syndrome, Myths and Facts feat. Dr. Alan Percy and a panel of experts
Jul 15 @ 1:00 pm
Please join us WEDNESDAY, July 15, 2020 (note: this is not on our usual Tuesday) at 1:00 pm Eastern Time (New York) with Dr. Alan Percy from the University of Alabama at Birmingham and Primary Investigator for the Natural History Study, along with a panel of experts, as we discuss Myths and Facts around life expectancy in Rett syndrome. Rett syndrome is a complex disorder, and inaccurate or invalid facts cause more harm than good. So join this webinar to learn the facts. Hear from experts and parents. More than empowering, it can be life-saving for our children with Rett syndrome. Even though the topic is difficult to talk about, we know you think about it. Let's dispel the myths. We believe that transformative treatments will come from gene therapy, medications and neuro-habilitative therapies. Our research strategy targets every possible approach so that we continue to not just improve longevity, but to decrease syndrome impact. We remain committed to creating solutions for today, to improve lives today, while we work to create a world without Rett syndrome. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Aug
11
Tue
RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
Aug 11 @ 1:00 pm
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome. Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons' areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Sep
8
Tue
RettEd: Holiday Life Hacks for Rett Syndrome feat. a panel of parent experts
Sep 8 @ 5:00 pm – 6:30 pm
Please join us Tuesday, September 8, 2020 at 5:00pm Eastern Time (New York) with Rettsyndrome.org and a panel of creative experienced parents who are ready to share their Rett Life Hacks, especially how to plan and execute inclusive and enjoyable dress-up and gift-giving celebrations for the whole family such as birthday parties, Halloween, school field trips and the upcoming holidays. "Life Hacks" are simple and clever tips and techniques for accomplishing tasks more easily and efficiently, overcoming many of our common Rett-life frustrations in simple and deliciously clever ways. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how a little creativity and out-of-the-box thinking can expand everyone's horizons! With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Sep
12
Sat
9th Annual Nebraska Strollathon: Virtual Edition
Sep 12 @ 9:00 am

9th Annual Nebraska Strollathon - Virtual Edition

Join Us for the 9th Annual Nebraska Strollathon At Rettsyndrome.org, the health & well being our of community is of utmost importance. Due to the Covid-19 pandemic, we have decided to host this year's Stroll VIRTUALLY! We have some tricks up our sleeve to make it a fun & engaging experience! Saturday, September 12th 2020 Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion Information & Registration
Sep
20
Sun
15th Annual Portland Strollathon
Sep 20 all-day
  Join us for the 15th Annual Portland Strollathon: Virtual Edition! After thoughtful consideration, we have decided to go VIRTUAL for the Portland Stroll! Sunday, September 20th: any time! Stroll at your leisure through your neighborhood, local park or hop on the treadmill! Follow us on Facebook for event updates, contests and more! Event Chair: Lacey & Leigh Calvert Information & Registration
Sep
26
Sat
17th Annual Cincinnati Strollathon: Virtual Edition
Sep 26 @ 9:00 am

17th Annual Cincinnati Strollathon: Virtual Edition

Join us for the 17th Annual Cincinnati Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Be sure to follow us on Facebook to stay up to date on our fun virtual activities: facebook.com/Cincinnati-Tri-State-Strollathon Date: September, 26th, 2020 Location: your neighborhood, walking trail or treadmill! Event Chairs: Brittney Gibson, Jim Magato, & Jennifer Magato Information & Registration
Oct
4
Sun
14th Annual Minnesota Virtual Strollathon
Oct 4 @ 9:00 am

14th Annual Minnesota Virtual Strollathon

Join us for the 14th Annual Minnesota Virtual Strollathon!
  • Sunday October 4th, 2020
  • Location: Virtual
  • Event Chair: Mary Kallstrom ([email protected])
Information & Registration
New Jersey Strollathon
Oct 4 @ 10:00 am

Join us for the 12th Annual New Jersey Strollathon- VIRTUALLY!

At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the Covid-19 pandemic, we will be going Virtual this year! We have some tricks up our sleeve to make this a fun & engaging event. Date: Sunday, October 4th, 2020 Location: Your neighborhood, local walking trail or treadmill! Follow us on Facebook for contests, event updates and more! Event Chair: Leslie Greenfield ([email protected]) Information & Registration
Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Oct
17
Sat
13th Annual St. Louis Virtual Strollathon
Oct 17 @ 9:00 am

13th Annual St. Louis Virtual Strollathon

Dates: Saturday, October 17, 2020 Location: Virtual Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Information & Registration
7th Annual Raleigh Strollathon: Virtual Edition
Oct 17 @ 10:00 am

7th Annual Raleigh Strollathon: Virtual Edition

Join us for the 7th Annual Raleigh Strollathon VIRTUALLY! Please join us on Saturday, October 17th at 11am EST on Facebook for our 'virtual' event. Be sure to wear your past or present Stroll apparel and share photos on our FB page. Follow our Facebook page for more info, contests and more! Facebook page: https://www.facebook.com/NCIRSFStrollRaleigh/ Questions? Contact: Gwen Noecker ([email protected]) or (919) 426-5554. Information & Registration
Oct
24
Sat
18th Annual SoCal Virtual Picnic & Strollathon
Oct 24 all-day

18th Annual SoCal Virtual Picnic & Strollathon

Join us for the 18th Annual SoCal Picnic & Strollathon - Virtual Edition!
  • Date: October, 24th, 2020
  • Location: Virtual
  • Event Contact: Sherri Brady (562-619-0109 or [email protected])
Information & Registration
1st Annual South Carolina Virtual Strollathon
Oct 24 all-day

1st Annual South Carolina Virtual Strollathon

Join us for the 1st Annual South Carolina Virtual Strollathon! Information & Registration
Oct
31
Sat
11th Annual Florida Strollathon: Virtual Edition
Oct 31 @ 9:00 am

11th Annual Florida Strollathon: Virtual Edition

Join us for the 11th Annual Florida Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Date: October, 31st, 2020 Location: your neighborhood, walking trial or treadmill! Event Contact: Jackie Ventura (978-500-2495 or [email protected]) Information & Registration
7th Annual Maine Strollathon: Virtual Edition
Oct 31 @ 9:00 am

7th Annual Maine Strollathon: Virtual Edition

Join us for the 7th Annual Maine Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Date: October 31, 2020 Location: your neighborhood, walking trial or treadmill! Stroll Chair: Evie Swan (775-200-8788 or [email protected]) Information & Registration
Nov
7
Sat
8th Annual San Antonio Virtual Strollathon
Nov 7 all-day

8th Annual San Antonio Virtual Strollathon

Join us for the 8th Annual San Antonio Virtual Strollathon!
  • Saturday November 7th, 2020
  • Location: Virtual
  • Event Chair: Ashley Cotham
Information & Registration
Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Dec 5 @ 12:00 pm

Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting

Date: Sat, December 5, 2020 Time: 11:00 AM - 12:30 PM Are you wanting to understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like an opportunity to re-connect and re-center with your Rett community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 11am -12:30pm (CT). Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information? Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.  
Jan
19
Tue
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Jan 19 @ 1:00 pm
Date: Tuesday, January 19 Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome and improved longevity in those with Rett syndrome. Learn how you can still take part in the NHS before its completion in July 2021. And find out how your participation in the new Rett Clinical Disease Registry, launching in August 2021, will benefit Rett syndrome drug development. Register for FREE, and submit your questions to be addressed during the webinar. Once registered, you will receive a confirmation email containing information about joining the webcast. Information & Registration
Feb
9
Tue
RettEd: Empowering Your Child’s Care Providers
Feb 9 @ 1:00 pm
Join us Tuesday, February 9, 2021, at 1:00 pm EST to learn how you can empower your care team to provide the best quality care for your loved one with Rett syndrome. Dr. Tim Benke from Colorado Children’s Hospital, Katie Hale, NP from Katie’s Clinic at UCSF Oakland, and Melissa Kennedy, Executive Director at Rettsyndrome.org, will unpack the Rett Syndrome Primary Care Guidelines. You’ll learn how to use this evidence-based tool in partnership with your child’s physicians and specialists. The Primary Care Guidelines provides suggested visit schedules by clinical area of assessment, specific concerns to look for, and timelines for follow up appointments. To ensure the best care for your loved one with Rett, join us on February 9 to take a deeper dive. We encourage physicians and health care providers to attend this webinar; invite them to register as well! Information & Registration
Feb
26
Fri
University of Alabama Birmingham Rett Clinic Town Hall Meeting
Feb 26 @ 5:00 pm
Are you wanting to better understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Friday, February 26, 2021, at 4pm -5:30pm Central time. Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Mar
9
Tue
RettEd: Rett Syndrome Communication Guidelines – Real World Application
Mar 9 @ 1:00 pm
Communication is one of Rett syndrome’s biggest challenges. As such, individuals with Rett struggle to connect, build relationships, and make their wishes known. This critical RettEd webcast can help, no matter where a person is on their Rett journey, whether newly diagnosed or an adult who is no longer receiving services. Theresa Bartolotta, PhD, CCC-SLP, along with a speech therapist and parent, will unpack The Communications Guidelines so families, physicians, and caregivers will know how to use this important tool in real-life situations. They’ll share how they’ve implemented its strategies to enhance communication, explain critical information, and answer your questions. Please submit your questions early, and we’ll also take a few during the webcast as time allows. Pre-registration is required. Order the Communication Guidelines handbook today - https://www.rettsyndrome.org/communications-guidelines/ Information & Registration
Apr
13
Tue
RettEd: Let’s Hear It For The Boys! Males with MECP2
Apr 13 @ 1:00 pm
We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options. We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. Information & Registration