Events

Jul
26
Sun
9th Annual Scramble for a Cure
Jul 26 @ 8:30 am

9th Annual Scramble for a Cure

Date: Sat July 26th 2020
Cost: $300/Team
Location: The Chief Golf Course, Bellaire MI
Contact: Sue Knight (231) 495-9794 or SueKnight@charter.net

https://www.golfthechief.com/

Information & Registration

Jul
30
Thu
Casting 4 A Cure 2020 – Cancelled
Jul 30 @ 9:00 am

Casting 4 A Cure 2020 – Cancelled

July 30-Aug 03

Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry’s leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder.

Information

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
9
Wed
Maximizing Communication in Rett Syndrome: Strategies for Engagement & AAC with RSO and NWRSA
Sep 9 @ 7:30 pm – 8:30 pm

Please join us Wednesday, September 9th at 4:00pm Pacific Time with Theresa Bartolotta, PhD, CCC-SLP and Bethany Stanley, MS, CCC-SLP as they provide Northwest Rett Syndrome families, educators and therapists an understanding of how to enhance communication in individuals with Rett syndrome.

Theresa Bartolotta, PhD, CCC-SLP will present an overview of the recently released Rett Syndrome Communication Guidelines and discuss how families can use the valuable tool to engage providers in using evidence-based strategies to assess and improve communication in Rett syndrome.

Bethany Stanley, MS, CCC-SLP will provide an in-depth explanation of how Augmentative and Alternative Communication (AAC) can be used, with all types of communicators, to establish or advance communication skills in their family members. The speakers will include videos and practical strategies that families can implement to assist the individual with Rett syndrome at home and in the community.

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
17
Thu
Gillette Children’s Hospital Rett Clinic Town Hall Meeting:
Sep 17 @ 7:00 pm

Rett Syndrome Services – Phalen Clinic at Gillette Children’s Hospital Town Hall, feat. Dr. Beisang, Dr. Feyma and more

Date: Thu, Sep 17, 2020
Time: 7:00 PM – 8:30 PM

Are you having difficulty understanding 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?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Thursday, September 17, 2020, at 7pm -8:30pm (CT).

Join us as Rettsyndrome.org, the Rett Clinic team at Gillette Children’s Hospital, the Rett research team at University of Minnesota, and members from the Midwest Rett Syndrome Foundation (MRSF) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

Sep
19
Sat
Run For Rett 2020 – Virtual
Sep 19 all-day

WHEN: Saturday, September 19, 2020
LOCATION: Busse Woods, Grove 28
Elk Grove Village, IL
Contact info: Diane Ross (diross62@aol.com).

From the serious runner to the recreational runner, to family members and friends of all ages the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett Syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run.

Information & Registration

Facebook Event

Children’s Hospital Colorado Rett Clinic Town Hall Meeting
Sep 19 @ 10:00 am

Rett Syndrome Clinic at Children’s Hospital Colorado Town Hall, feat. Dr. Benke, Tristen Dinkle & More

Date: Sat, Sep 19, 2020
Time: 10:00 AM – 11:30 AM

Are you having difficulty understanding 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?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, September 19, 2020, at 10am -11:30am (MT).

Join us as Rettsyndrome.org, the Rett Clinic team at Children’s Hospital Colorado, and members from the Rocky Mountain Rett Association (RMRA) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

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