Events

Mar
21
Sat
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Cammy Can’s Cinderella Story
Mar 21 @ 5:00 pm – 10:00 pm

Cammy's Golden birthday

Help us celebrate Cammy’s 11th birthday by attending and raising a ton of money to find a cure so she can drink with you in Sidebar on her 21st birthday!

WHEN | POSTPONED – New Date TBD 
WHERE | Sidebar, 221 N LaSalle St., Chicago, IL

All you can eat and open bar including craft beer, wine, cocktails from 5-10PM.
Food provided by Buona Beef including beef, sausage, pasta and salad.

Registration & Information

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Follow CAMMY CAN on Facebook

Apr
9
Thu
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At-Home Moves and Stretches for Tweens & their Caregivers, feat. Meir Lotan
Apr 9 @ 11:00 am – 12:00 pm

Join us April 9 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with 4 U.S. families. Meir will work with their children who are between 8 and 13, with a range of abilities, using what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home.

All live sessions will be posted on YouTube after the training.

Apr
16
Thu
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At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan
Apr 16 @ 11:00 am – 12:00 pm

Join us April 16 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with Rett families. Meir will work with their adult children who have a range of abilities. He will use what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home.

All live sessions will be posted on YouTube after the training.

Apr
20
Mon
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Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta 
Apr 20 @ 2:00 pm – 3:00 pm

Join us Monday, April 20 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they introduce Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the first 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.

Apr
23
Thu
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RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
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
27
Mon
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Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta 
Apr 27 @ 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
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

At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we are following the recommendations of the CDC and post-poning or cancelling our upcoming in-person events. At this time, we have decided to cancel the 8th Annual Charamella Golf Tournament for 2020. We apologize for the inconvenience and will be happy to refund any golfers/sponsors.

Information and to Donate

Communications Guidelines Pop-up