Oct
5
Sat
Oct 5 @ 5:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/Scarlotte-Parks-Event-10.5.jpg)
Categories: Special Events - General
Oct
15
Tue
Newly Published Communication Guidelines for Rett
Tuesday, October 15, 2019 1:00pm Webinar![](https://www.rettsyndrome.org/wp-content/uploads/Gill-and-Theresa.jpg)
Categories: Education Slider Webinar
Oct
19
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/SoCal-2019-1400x705.png)
WHEN | Saturday, October 19, 2019
12:00 PM – 4:00 PM
WHERE | Whittier High School 12417 East Philadelphia St Whittier, CA 90601 Directions
Visit the Event Page Event Flyer Categories: Special Events - General
![](https://www.rettsyndrome.org/wp-content/uploads/unnamed-6.jpg)
A Night at the Races to Benefit Rett Syndrome
Chinese Auction Door Prizes $10 Horses $10 Entry Fee Tickets available at the door Doors open at 6pm Races start at 9pm Categories: Special Events - General
Oct
24
Thu
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Oct
26
Sat
Categories: Special Events - General
Nov
1
Fri
Zumbathon Charity Event for Rett Syndrome
In Honor for Allison
Date: Friday, November 1st Time: 5:00-7:30pm Join us for an evening of instructed Zumba while raising money for Rettsyndrome.org. Admission is $10.![](https://www.rettsyndrome.org/wp-content/uploads/Zumba-for-Rett.png)
Categories: Special Events - General
![](https://www.rettsyndrome.org/wp-content/uploads/Hand_invite4.jpg")
YOU CAN MAKE A DIFFERENCE
When: Friday, November 1, 2019 Where: Mercedes-Benz of The Woodlands 16917 Interstate 45 South The Woodlands, TX 77385 Time: "Come and Go" from 6:00 p.m. to 9:00 p.m. Parking: Valet Parking Available Fare: Dosey Doe is providing wine and BBQ sliders at no cost Entertainment: Acoustic show by Kevin and his son Coleton Featured Art: 30 - 40 of Dave Clements' and Kevin Black's best music black and white photographs taken over the last decade will be available for purchase (tax-deductible donation to Rett Syndrome) • Meet photographers Dave Clements & Kevin Black. • View their photography that will be displayed in the show room. • Enjoy some music memorabilia. • Listen to a live music performance by Kevin Black and his son Coleton. • Purchase a copy of their coffee table book Raising A Hand - Volume One. Pre-order order forms for Volume Two will be available. • Learn about Rett syndrome and what the two photographers are doing to raise awareness for this rare disorder. • Enjoy a Dosey Doe brisket slider and a glass of wine. • Enjoy the collection of some of the finest automobiles in the world! Finally if you can't make it and still have not pre-ordered your copy of Raising A Hand - Volume Two, you can go to www.RaisingAHand.com and do so for $42.95 ($35 plus $7.95 shipping). Plus for an additional $25 donation you can get a signed copy of Volume One shipped to your home almost immediately. Information Registration Categories: Special Events - General
Nov
2
Sat
Nov 2 @ 8:00 am
![](https://www.rettsyndrome.org/wp-content/uploads/URMC-RS-Family-Ed-Day.png)
Categories: Ed Day Education Slider
Nov
9
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/DD2DC353-4752-4345-9744-F9AE3B24FA29.jpg)
Be a part of our Inaugural Boots & Bling Rett Gala!
Saturday, November 9th, 2019
Firehouse Saloon 5930 Southwest Freeway, Houston, TX 77057 6:00 p.m. VIP reception for Rett Families & Sponsors 6:30 p.m. Doors open to public
We're excited to invite you to Houston's very first Reach for a Cure - Boots & Bling Rett Gala benefitting Rettsyndrome.org. This entertaining event is designed to raise funds for a cure for Rett syndrome while having lots of fun at the same time. Get dolled up, but don't forget your boots! This honky-tonk is going to rattle with special musical guests Coleton Black, Chubby Knuckle Choir and Pauline Reese. We'll also have a live and silent auction full of great items – perfect time to get holiday gifts, or something for yourself! Registration & Sponsorship View Sponsorship Opportunities All proceeds from sponsorships, donations, and tickets goes to Rettsyndrome.org, the longest-standing Rett syndrome research and family empowerment organization.
Categories: Special Events - General
Nov
12
Tue
Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about it. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Categories: Education Slider Webinar
Nov
15
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/image001.png)
Find a Cure
a one night pop-up event with art by Cecily Miniaci
Date: November 15, 2019 Time: 6-9PM Location: 701 Broadway Blvd, Kansas City, MO Local Kansas City artist, Cecily Miniaci, will be doing a pop up art event downtown at Roasters Block on November 15th from 6-9pm with a portion of the proceeds benefiting rettsyndrome.org. Information & Registration Categories: Special Events - General
Dec
7
Sat
Hannah's Art Show
Save the Date for Hannah's Art Show. There will be note cards, prints, and original paintings for sale to benefit Rettsyndrome.org. Date: December 7, 2019 Time: 2-4pm Location: Four Corners Framing Gallery Contact Information: Trisha Carpenter Email: [email protected] Categories: Special Events - General
Dec
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/TimBenke-1.jpg)
Categories: Education Slider Webasts
Jan
7
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/jan.png)
Categories: Ed Day Education Slider
Jan
25
Sat
Jan 25 @ 4:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/ticketbanner.jpg)
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield
Date: Saturday, January 25th, 2020 Time: 4:00pm The People's United Center at Quinnipiac, 305 Sherman Ave, Hamden, CT 06518 MAAC Tournament Kick Off, Rett Syndrome Awareness, Camper Reunion Day Information & Registration For Questions please contact Nicole McAmis at [email protected] Categories: Special Events - General
Feb
11
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Fink-Headshot2-scaled.jpg)
Categories: Ed Day Education Slider
Mar
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Meir-Lotan.png)
Categories: Ed Day Education Slider
Apr
23
Thu
Apr 23 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/april.png)
Categories: Ed Day Education Slider
May
15
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/Alysson_Muotri-copy.jpg)
Categories: Education Slider Webinar
Jun
9
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798c6e59f.jpg)
Categories: Education Slider Webinar
Jun
13
Sat
![Cammy's Golden birthday](https://www.rettsyndrome.org/wp-content/uploads/Cammy-Can_event-banner.jpg)
Categories: Special Events - General
Jun
18
Thu
![](https://www.rettsyndrome.org/wp-content/uploads/78803772_10157948784504452_1641598429664641024_o.jpg)
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 [email protected] or Jennifer Mosca at [email protected] LEARN MOREJul
15
Wed
Jul 15 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/dc4292665fc01efcb07b74642862c677.jpg)
Categories: Education Slider Webinar
Jul
26
Sun
9th Annual Scramble for a Cure
Date: Sat July 26th 2020 Cost: $300/Team Location: The Chief Golf Course, Bellaire MI Contact: Sue Knight (231) 495-9794 or [email protected] https://www.golfthechief.com/ Information & Registration Categories: Special Events - Golf Tournaments
Jul
30
Thu
Casting 4 A Cure 2020 – Cancelled
July 30-Aug 03 Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry's leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder. Information Categories: Special Events - General
Aug
11
Tue
Aug 11 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798ef8417.jpg)
Categories: Education Slider Webasts Webinar
Sep
8
Tue
Sep 8 @ 5:00 pm – 6:30 pm
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798f3481a.jpg)
Categories: Education Slider Webinar
Sep
17
Thu
Rett Syndrome Services - Phalen Clinic at Gillette Children's Hospital Town Hall, feat. Dr. Beisang, Dr. Feyma and more
Date: Thu, Sep 17, 2020 Time: 7:00 PM - 8:30 PM Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Thursday, September 17, 2020, at 7pm -8:30pm (CT). Join us as Rettsyndrome.org, the Rett Clinic team at Gillette Children's Hospital, the Rett research team at University of Minnesota, and members from the Midwest Rett Syndrome Foundation (MRSF) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration Categories: Education Slider
Sep
19
Sat
Rett Syndrome Clinic at Children's Hospital Colorado Town Hall, feat. Dr. Benke, Tristen Dinkle & More
Date: Sat, Sep 19, 2020 Time: 10:00 AM - 11:30 AM Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, September 19, 2020, at 10am -11:30am (MT). Join us as Rettsyndrome.org, the Rett Clinic team at Children's Hospital Colorado, and members from the Rocky Mountain Rett Association (RMRA) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration Categories: Education Slider
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