Events

Apr
23
Thu
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RettEd: Maximizing Neuroplasticity in Therapies feat. Dr. Pam Diener
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

Apr
25
Sat
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Run For Rett 2020
Apr 25 @ 8:30 am

WHEN: Saturday, April 25, 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

May
1
Fri
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The Great Rett Shootout
May 1 @ 9:00 am

The Shirley family is hosting the 2nd Annual Great Rett Shootout.
Friday, May 1st.

Come out and break some clays as they raise funds on behalf of their daughter Dayton and many others affected by Rett syndrome.

Registration, sponsorships and donation options are listed below. For any questions, please contact Kent & Amanda Shirley at tgrsevents@gmail.com. Be sure to follow their Facebook page for event updates: https://www.facebook.com/TheGreatRettShootout/.

Information & Registration

May
2
Sat
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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 (stlstrollathon@gmail.com)
Website: www.st-louis.strollathon.org
FB event: https://www.facebook.com/events/481490805883829/

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4th Annual Iowa Strollathon
May 2 @ 9:00 am

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 (CureRettIowa@gmail.com)
Website: www.iowa.strollathon.org
FB event: https://www.facebook.com/events/944620542600601/

May
11
Mon
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8th Annual Charamella Golf Tournament
May 11 @ 11:00 am

8th Annual Charamella Golf Tournament

Date: May 11, 2020
Time: 11am – 7pm
Location: Westover Country Club
401 S Schuylkill Ave
Norristown, PA 19403

Mark Charamella was the father of a daughter with Rett syndrome. He did everything he could to make her life better. It is in his honor that his family and friends gather to celebrate a life well lived and give to a cause that was close to his heart.

Information & Registration

May
12
Tue
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RettEd: Mini Brains in Space – Pushing the Limits of Science
May 12 @ 1:00 pm

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
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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 (fenyos@yahoo.com)
Website: www.michigan.strollathon.org
FB event: https://www.facebook.com/events/233787530951786/

May
19
Tue
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Samantha Corpus Golf Tournament
May 19 @ 9:00 am

15th Annual Samantha Corpus Golf Tournament
Tuesday, May 19, 2020
Blackhawk Country Club Danville, CA

Information & Registration

Jun
6
Sat
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East Coast Rettsyndrome.org Ed Day
Jun 6 @ 9:00 am

East Coast Rettsyndrome.org Ed Day

June 6, 2020
Baltimore, MD (in partnership with Kennedy Krieger Institute )

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 & INFORMATION