Events

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

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
1
Mon
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11th Annual Ella Foard Charity Golf Classic
Jun 1 @ 8:00 am

The Ella Foard Foundation hosts the 11th Annual Charity Golf Classic on Monday, June 1st at Providence Country Club! Enjoy an exciting round of golf in a beautiful setting – all for a great cause!

The tournament includes 18 Holes of Captain’s Choice Golf, Coffee & Pastries upon arrival, Lunch and Awards Dinner, Raffles & Goody Bags, Skill (Luck?) Contests, and a Silent Auction!

Schedule:

8:30
– Registration/Driving Range Opens
9:45 – Lunch and Group Pictures
10:00 – Shotgun Start
3:00 – Awards Dinner

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

Jun
18
Thu
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RettGetAway
Jun 18 – Jun 21 all-day

RettGetAway

We are pleased to partner with the Kayla Mosca Foundation to bring back the RettGetAway for 2020. The RettGetAway is for everyone wanting to connect with families and loved ones living with Rett. Attendees will enjoy an extended weekend full of acceptance and experiences, learning together how to live a life without limits!

LEARN MORE

Aug
15
Sat
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Northwest Rettsyndrome.org Ed Day
Aug 15 @ 9:00 am

Northwest Rettsyndrome.org Ed Day

August 15, 2020
Vancouver, WA (in partnership with the Northwest Rett Syndrome Association)

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.

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.

Communications Guidelines Pop-up