Events

Aug
11
Tue
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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
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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
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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
26
Sat
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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

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7th Annual Maine Strollathon: Virtual Edition
Sep 26 @ 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: September, 26th, 2020
Location: your neighborhood, walking trial or treadmill!
Stroll Chair: Evie Swan (775-200-8788 or evielynn6@gmail.com)

Information & Registration

Oct
4
Sun
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14th Annual Minnesota Strollathon
Oct 4 @ 9:00 am

14th Annual Minnesota Strollathon

Join us for the 14th Annual Minnesota Strollathon!

Information & Registration

Oct
13
Tue
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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
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13th Annual St. Louis Strollathon
Oct 17 @ 9:00 am

13th Annual St. Louis Strollathon

Dates: Saturday, October 17, 2020

Location: JCC St Louis, 2 Millstone Campus Drive, St Louis, MO 63146
Registration: 9am
Stroll: 10am
Event Chairs: Joyce Opinsky & Amy Kreher (stlstrollathon@gmail.com)

Information & Registration

Oct
24
Sat
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18th Annual SoCal Picnic & Strollathon
Oct 24 @ 9:00 am

18th Annual SoCal Picnic & Strollathon

Join us for the 18th Annual SoCal Picnic & Strollathon!

  • Date: October, 24th, 2020
  • Time: 12:00pm-4:00pm
  • Location: Whitter High School, 12417 East Philadelphia Street, Whittier CA 90601
  • Event Contact: Sherri Brady (562-619-0109 or mom2lcm@gmail.com)

Information & Registration

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1st Annual South Carolina Strollathon
Oct 24 @ 9:00 am

1st Annual South Carolina Strollathon

Join us for the 1st Annual South Carolina Strollathon!

Information & Registration