Events

Oct
5
Sat
Gulf Coast Endurance Ride
Oct 5 @ 1:00 am
RRAA 2018 Launch

Gulf Coast Endurance Ride

Saturday, October 5th from Biloxi MS to Pensacola FL. If you’re up for a challenging ride, consider joining KC Byers and friends for a century ride. KC is the creator of the Rett Ride Across America and step-dad to Katelyn with Rett. Last year he completed his second 2,600 mile ride across the country. Here are the details for this year’s Endurance Ride: Start: Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530 Finish: WEAR TV, 4990 Mobile Highway, Pensacola FL 32506 114 mile with volunteer sag support & police escorts Join for any length of the ride. Here are the multiple lag points where you can join. Lag Point #1 (120 Miles): Meet at Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530 Lag Point #2 (90 miles): Meet at US Hwy 90 at the Missippi/Alabama line Lag Point #3 (70 miles): Meet at Raceway 6709, 5455 Government Bvld, Mobile AL 36619 (Theodore exit junction I-10 and US 90) Lag Point #4 (45 miles): Meet at Eastern Shore Bike Shop, 845 US-90 Ste 102, Daphne, AL 36526 Lag Point #5 (20 miles): Maw Maw’s Country Market, 26010 US Hwy 90, Robertsdale, AL Junction 90 & 87 END at: WEAR Channel 3, 4990 Mobile Hwy, Pensacola Fl Ride in style with your RRAA gear- select a jersey, cycle shorts or both. Shop here. Register TODAY!
OKC River Run @ Wiley Post Park
Oct 5 @ 8:00 am

OKC River Run

The goal of the OKC River Run is to raise support and awareness for Rett Syndrome, which is a genetic disorder that affects mainly girls and severely impairs "nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily." The need for research is critical. The OKC River Run is a USATF sanctioned and certified course along the picturesque Oklahoma River that provides a smooth, level, paved trail through downtown Oklahoma City free of vehicle traffic.
  • 6:30 a.m. to 8:30 a.m. - Packet Pick Up and onsite Registration.
  • 8:00 am. - Half Marathon* Start
  • 8:50 a.m. - 5K Start
  • 9:00 a.m. - 10K Start
  • 9:00 -11:00 a.m. - Awards Ceremony *See Details
All races will use chip timing for official race results.
All courses are USATF certified.
Registration & Information
Purple Pumpkin Party @ Scarlett Parks Foundation & Valley Children's Hospital
Oct 5 @ 5:00 pm
Join us for the 3rd Annual Purple Pumpkin Party! The Purple Pumpkin Party to benefit the Scarlett Parks Foundation. This signifies that, in honor of their granddaughter Scarlett Parks, Don and Jodi Searcy will be conducting a fundraising event, the “Purple Pumpkin Party”. The event will take place October 5th, 2019 at the International Agri-Center in Tulare CA. The Purple Pumpkin Party will be a celebration of a community coming together to help raise awareness and money to find a cure for Rett syndrome, consisting of dinner, entertainment, an auction, silent auction and many other fun items to bid on to help raise money needed to help find a cure. Registration & Event Details
Oct
6
Sun
New Jersey Strollathon @ Maxwell Park
Oct 6 @ 10:00 am

11th Annual New Jersey Strollathon

Join us for the 11th Annual New Jersey Strollathon! Sunday, October 6, 2019 Registration: 10:00am Stroll: 11:00am Location: Maxwell Park, Hoboken NJ 07030 Event Chair: Leslie Greenfield ([email protected]) Registration & Information
Minnesota Strollathon @ Savage Environmental Learning Center
Oct 6 @ 1:00 pm
Join us for the 13th Annual Minnesota Strollathon! Sunday October 6th, 2019 Registration: 1:00pm, Stroll: 2:00pm Location: Savage Environmental Learning Center Website :: Directions Event Chair: Mary Kallstrom ([email protected]) Registration & Information
Oct
15
Tue
RettEd: Newly Published Communication Guidelines for Rett
Oct 15 @ 1:00 pm

Newly Published Communication Guidelines for Rett

Tuesday, October 15, 2019 1:00pm Webinar Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts. Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards our collective hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Registration & Information
Oct
19
Sat
San Antonio Strollathon @ San Antonio Aquarium
Oct 19 @ 10:00 am

7th Annual San Antonio Strollathon

Join us for the 7th Annual San Antonio Strollathon! Saturday October 19th, 2019 Registration: 10:00am, Stroll: 10:30am Location: San Antonio Aquarium Website :: Directions Event Chair: Courtney Bernal Registration & Information
Tennessee Strollathon @ Athens Park
Oct 19 @ 10:00 am

2nd Annual Tennessee Strollathon

Join us for the 2019 Strollathon season! NEW DATE: Saturday October 19th, 2019 Location: Athens Park, Athens, TN Registration: 10:00am, Stroll: 11:00am Event Chair: Sally Teague ([email protected]) Registration & Information
SoCal Picnic @ Whittier High School
Oct 19 @ 1:00 pm

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

A Night at the Races
Oct 19 @ 11:45 pm

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
Oct
24
Thu
Rett Syndrome Ed Day: Communication and Literacy for Individuals with Complex Communication Needs @ Monmouth University
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Oct
26
Sat
Raise a Glass Against Rett: Napa @ Tre Posti
Oct 26 @ 9:00 pm

Napa Event logo banner

Date: Saturday, October 26, 2019 Time: 6:00PM-10:00PM Location: Tre Posti, 641 Main Street, St. Helena, CA 94574 Registration & Information
Nov
1
Fri
Zumba for Rett Syndrome
Nov 1 @ 5:00 pm

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. Contact Information: Claudia Juarez 817-233-2189
Raising A Hand @ 16917 Interstate 45 S., The Woodlands, TX 77385
Nov 1 @ 6:00 pm

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
Nov
2
Sat
URMC Rett Syndrome Family Education Day @ University of Rochester Medical Center
Nov 2 @ 8:00 am
$10 registration fee per family including conference, breakfast and lunch. Families and caregivers: don't miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field. Information & Registration For more information, email: delmonte.urmc.edu or [email protected]
Florida Strollathon @ Space Field of Dreams
Nov 2 @ 9:00 am

10th Annual Florida Strollathon

Join us for the 2019 Strollathon season! November 2nd, 2019 Space Field of Dreams, West Melbourne FL 9:00am-1:30pm Event Contact: Henry Perez ([email protected]) Registration
Nov
9
Sat
Reach for a Cure: Houston
Nov 9 @ 7:00 pm
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.
Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm
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
Nov
15
Fri
Find a Cure: Pop-up Event
Nov 15 @ 6:00 pm

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
Dec
7
Sat
Hannah’s Art Show
Dec 7 @ 2:00 pm

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]
Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children's Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020. This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did 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 Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Jan
7
Tue
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm
Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children's Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University. We will discuss ¿Qué es el síndrome de Rett? This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
Jan
25
Sat
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield @ The People's United Center at Quinnipiac
Jan 25 @ 4:00 pm

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]
Feb
11
Tue
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm
Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions. Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego. Dr. Pichard is Rettsyndrome.org's Chief Science Officer Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents. Register Today
Mar
1
Sun
Napa Valley 1/2 & Full Marathon
Mar 1 @ 6:00 am

Join us for the Napa Valley Half & Full Marathon!

Ever wanted to run through wine country? Well here is your chance! Rettsyndrome.org has been granted ten charity bibs for the 2020 Napa Valley Half & Full Marathon! We are excited for this new partnership and can’t wait to grow our #RettRacer team! Help to end Rett syndrome while you run through wine country at this Boston qualifier race. Whether you plan to run or want to cheer on our team, please note all of the exciting information below! Date: Sunday, March 1st, 2020 Location: Napa, California Website (inclusive of hotel details, routes, etc): https://napavalleymarathon.org/ To participate as a Rett Racer in the Napa Valley Half or Full Marathon, please follow the steps below. *Note: there is a $2500 fundraising requirement for this event* Runners are responsible for all expenses incurred from race (registration, travel, etc).
  1. Register for the full or half marathon at https://napavalleymarathon.org/
  2. Half marathon Rett code (10% reg discount): RETTHALF2020
  3. Full marathon Rett code (10% reg discount): RETTFULL2020
  4. After registration, please visit Napa Valley team page to create your personal fundraising page.
  5. https://rettracer.everydayhero.com/us/napa-valley-2020-runners
  6. Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
  7. Create & customize your fundraising page and share via social media and email with your contacts.
  8. Contact Jackie Ventura at [email protected] to order your Rett Racer t-shirt.
Rettsyndrome.org will have a tent at location TBD where runners can congregate post-race, Rett families can mingle and RSO will be passing out awareness information to spectators! Please follow this event to stay current on up to date information.
Mar
10
Tue
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm
Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel. We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register. 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
Apr
9
Thu
At-Home Moves and Stretches for Tweens & their Caregivers, feat. Meir Lotan @ Facebook Live
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
At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan @ Facebook Live
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
23
Thu
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
Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
Apr 27 @ 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.