Events

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 – Postponed
Jun 18 @ 12:00 am – Jun 21 @ 12:00 am

RettGetAway: Postponed

After much consideration, our RettGetAway committee has decided to postpone the June 2020 RettGetAway in San Diego. The health of our children is of utmost concern. Once it is deemed safe and sound to convene large groups in public spaces again, we will evaluate a future Rett GetAway.

Many were working to create this ‘life without limits’ opportunity. A special thanks to the Kayla Mosca Foundation, Surfing Madonna, Surfin’ Fire, Merlin’s Magic Wand in association with Legoland San Diego, The Cassara Carlsbad by Hilton, our CA State Rep Sherri Brady, and ACADIA Pharmaceuticals.

We hope that all of our families and partners emerge from this situation whole, intact, and able to plan an even more extraordinary RettGetAway!

If you have made any travel bookings for the RettGetAway, we advise you to cancel them now while forgivable and with no penalty.

Rettsyndrome.org will be returning the group Legoland tickets awarded by Merlin’s Magic Wand so that a future award can be made again to either our group or to individuals who may choose to apply at another time (they only allow one Magical Day Out per family, one time)

We appreciate your understanding, and we hope that you all stay healthy and safe.
Please direct any questions to Paige Nues at pnues@rettsyndrome.org or Jennifer Mosca at info@thekaylamoscafoundation.org

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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.

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

Communications Guidelines Pop-up