Events

Sep
8
Tue
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RettEd: Holiday Life Hacks for Rett Syndrome feat. a panel of parent experts
Sep 8 @ 1:00 pm

Please join us Tuesday, September 8, 2020 at 1:00pm 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
19
Sat
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Run For Rett 2020
Sep 19 @ 8:30 am

WHEN: Saturday, September 19, 2020
TIME: 8:30 AM
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

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Southeast Rettsyndrome.org Ed Day
Sep 19 @ 9:00 am

Southeast Rettsyndrome.org Ed Day

September 19, 2020
Greenwood, SC (in partnership with Greenwood Genetic Center)

Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.

Registration opening soon.

Oct
3
Sat
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Moonshiner’s Ball
Oct 3 @ 5:00 pm

Moonshiner’s Ball

Date: Saturday, October 3, 2020
Time: 5:00 PM – 11:00 PM
Location: Space Coast Harley-Davidson
1440 Sportsman Lane Northeast
Palm Bay, FL 32905

The Event will consist of Moonshine from around the country, and Special Guest Tim Smith from the hit TV show “Moonshiners”. The Blue Diamond band will be performing, and we will have vendors, food trucks, and even Firecracker, the mechanical bull.

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

Nov
10
Tue
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RettEd: Communication Guidelines and Workbook for Rett Syndrome feat. Theresa Bartolotta, PhD
Nov 10 @ 1:00 pm

Please join Rettsyndrome.org on Tuesday, November 10, 2020 at 1:00pm Eastern Time (New York) to learn how to put the Communication in Rett Syndrome Guidelines and workbook into real-world practice with Theresa Bartolotta, PhD, CCC-SLP, Program for Research and Support for Rett Syndrome, Monmouth University, NJ; Speech-Language Pathologist, Tender Ones Therapy Services, Dacula, GA and co-author of these guidelines.

Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone involved. Join this webinar to learn how.

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

Communications Guidelines Pop-up