Calendar

Featured Event:

You can stroll to create a world without Rett! Join your local Rett community this fall at a Strollathon near you.

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ALL EventS:

Mar
13
Wed
ASHA Rare Diseases and Disorders: SLP Assessment and Intervention @ Online Conference
Mar 13 – Mar 25 all-day

In March, Theresa Bartolotta, PhD, CCC-SLP, will present at an online conference from the American Speech-Language-Hearing Association (ASHA) on Rare Diseases and Disorders: SLP Assessment and Intervention. Pass this information on to your child’s SLP or care provider who can earn CE credits for attending!

The Rett Syndrome Communication Guidelines: A Resource for Best Practices in SLP Assessment and Evaluation
Theresa Bartolotta, PhD, CCC-SLP

This session will discuss how the features of Rett syndrome impact communication as well share strategies to assist individuals with Rett syndrome and their families in advancing communication to improve quality of life. The session will focus on The Rett Syndrome Communication Guidelines—the first evidence-based resource for assessment and evaluation of communication skills in individuals with Rett syndrome.

After completing this session, you will be able to:

  • summarize the contents of the Rett Syndrome Communication Guidelines
  • identify resources for best practices in communication assessment and intervention for individuals with Rett syndrome
  • use the Rett Syndrome Communication Guidelines to assist team members in understanding how the features of Rett syndrome impact communication

Content disclosure: This session focuses on a particular assessment and intervention guide.

MORE INFORMATION

Apr
26
Fri
The Great Rett Shootout @ Blackwood Sporting Co.
Apr 26 @ 2:00 pm

Date: Friday, April 26, 2024
Time: Registration 12 p.m. CT | Event Start 1:00 p.m. CT
Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304)

It’s that time again! Let’s break some clays to create a world without Rett! Gather your friends and family for an incredible day of tournament skeet shooting, a crawfish boil, and tons of fun!

INFORMATION & REGISTRATION

May
4
Sat
Run for Rett @ Busse Woods Grove - North, Grove #26
May 4 @ 8:00 am

Date: Saturday, May 4, 2024
Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run
Location: Busse Woods – Grove 26, Elk Grove, IL
The race will start and finish at Grove #26. Enter Busse Woods off of Arlington Heights Road, south of Higgins Road in Elk Grove Village.

From the serious runner to the recreational runner to family members and friends of all ages, the 25th annual 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.

*First 200 participants receive an official Run For Rett t-shirt*

INFORMATION & REGISTRATION

May
13
Mon
Mark Charamella Memorial Golf Outing & Dinner @ Westover Country Club
May 13 @ 11:00 am

Date: Monday, May 13, 2024
Time: Registration 11:00 am | Dinner 5 pm
Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403)

Join us for the 11th annual Mark Charamella Memorial Golf Outing & Dinner!

We invite you to take part in the 11th Annual Mark Charamella Memorial Golf Outing & Dinner on May 13, 2024, at Westover Country Club. This tournament will benefit the International Rett Syndrome Foundation in memory of Mark Charamella and in honor of his daughter with Rett syndrome, Deirdre.

By participating in this tournament, you can hit the links to create a world without Rett for Deirdre and for many others. 

INFORMATION & REGISTRATION

Jun
18
Tue
2024 IRSF Rett Syndrome Scientific Meeting @ The Westin Westminster
Jun 18 – Jun 19 all-day

Date: June 18-19, 2024
Time: All Day
Location: Westminster, Colorado

LEARN MORE

The research community is invited to join us in Colorado for the 2024 IRSF Rett Syndrome Scientific Meeting next June!

Part of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome.

Thank you to our sponsors:

Presenting Sponsor:

Platinum Sponsors:

Jun
19
Wed
ASCEND 2024 Rett Syndrome National Summit @ The Westin Westminster
Jun 19 – Jun 22 all-day

Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Come join us in the Mile High City as we ascend to greater heights at The Westin Westminster. This location offers sweeping views of the Rocky Mountains and is conveniently situated just 15 minutes from both Denver and Boulder.

Featuring a lineup of expert speakers, updates on Rett syndrome research, and opportunities to connect with your Rett community, ASCEND 2024 is not to be missed. Look out for information on early bird registration, discounted room rates, and more later in 2023!

Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome.

REGISTER & MORE INFORMATION

Thank you to our sponsors:

Presenting Sponsor:

Platinum Sponsors:

Jun
28
Fri
Rip it for Rett Golf Tournament @ Dunegrass Golf Club
Jun 28 @ 8:00 am

Date: Friday, June 28th, 2024
Location: Dunegrass Golf Club (65 Wild Dunes Way, Old Orchard Beach, ME 04064)
Time: 7 a.m. Registration | 8 a.m. Scramble

The Rip it for Rett hockey-themed golf tournament is a blast (if we do say so ourselves), a great round of golf on a great course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun!

INFORMATION & REGISTRATION

Jul
8
Mon
Goals Fore Gracie @ Thousand Oaks Golf Club
Jul 8 @ 10:30 am


Date: Monday, July 8, 2024
Time: Registration 9 a.m. ET | Shotgun Start 10:30 a.m. ET
Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI 49525)

The Visser Family is excited to host their 2nd annual Goals Fore Gracie Golf Outing inspired by their 5-year-old daughter, Gracie. Join us for a round of golf, lunch, raffle, after tournament cocktails, and more!

INFORMATION & REGISTRATION

Jul
13
Sat
POUND Out Rett @ IBEW Local 1
Jul 13 @ 1:00 pm – 5:00 pm

Date: Saturday, July 13, 2024
Time: 12-4 p.m.
Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110)

Channel your inner rockstar in POUND® – an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose!

Come rock out workout, enjoy refreshments, vendors, a silent auction, and more!

More information coming soon!

Jul
20
Sat
Let’s Flamingle for a Cure @ Henmick Farm & Brewery
Jul 20 @ 2:00 pm – 5:00 pm

Date: Saturday, July 20, 2024
Time: 2-5 p.m. ET
Location: Henmick Farm & Brewery (4380 N Old State Rd, Delaware, OH 43015)

More information coming soon!

Sep
7
Sat
Pittsburgh Strollathon @ Buffalo Creek Nature Park
Sep 7 @ 10:00 am

Date: Saturday, September 7, 2024
Time: 10:00 a.m. ET
Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055)
Event Chairs: Terre & Kati Gray (Contact Email)

MORE INFORMATION COMING SOON!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Sep
21
Sat
Raise a Glass for Rett – Kansas @ Olathe Community Center
Sep 21 all-day

Date: Saturday, September 21, 2024
Time: TBD
Location: Olathe Community Center (1205 E Kansas City Rd, Olathe, KS 66061)

More information coming soon!

Sep
28
Sat
Nebraska Strollathon @ Yanney Park
Sep 28 @ 12:00 pm

Date: Saturday, September 28, 2024
Time: 11 a.m. CT
Location: Yanney Park (2020 W 11th St, Kearney, NE 68845)
Event Chairs: Elly Gullion

MORE INFORMATION COMING SOON!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Oct
2
Wed
9th World Rett Syndrome Congress
Oct 2 – Oct 5 all-day

RETT Syndrome Association of Australia is excited to announce the 9th World RETT Syndrome Congress. This will be held on the Gold Coast in Queensland, Australia on Wednesday the 2nd of October until Saturday the 5th of October 2024.

MORE INFORMATION

Oct
5
Sat
New Jersey Strollathon
Oct 5 all-day

Date: Saturday, October 5, 2024
Time: TBD
Location: TBD
Event Chairs: Leslie Greenfield & Allison Fitzgerald

MORE INFORMATION COMING SOON!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Maryland Strollathon @ Matthew Henson State Park
Oct 5 @ 12:00 pm – 4:00 pm

Date: Saturday, October 5th, 2024
Time: 12:00 p.m.-4 p.m. ET
Location: Matthew Henson State Park (13421 Georgia Ave, Silver Spring, MD 20906)
Event Chairs: Toni Moore & James Borris, Daniel Jackson, and Cathy Borris-Hale

MORE INFORMATION COMING SOON!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Oct
6
Sun
Minnesota Strollathon
Oct 6 all-day

Date: Sunday, October 6th, 2024
Time: TBD
Location: Savage, MN
Event Chairs: Mary Kallstrom (Contact Email)

MORE INFORMATION COMING SOON!

Make sure to follow the event on Facebook to stay up to date!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Oct
11
Fri
Warrior William Fishing Tournament
Oct 11 all-day

Date: Friday, October 11, 2024
Time: TBD
Location: Imperial, MO

More information coming soon!

Oct
14
Mon
On the Ridge for Rett Golf Scramble
Oct 14 all-day

Date: Monday, October 14, 2024
Time: TBD
Location: Lenexa, KS
Event Chair: Haley Douglass and Sam, Katie, & Parthy Evans

More information coming soon!

Oct
16
Wed
Rhinegeist Beer for Humans Pint Night @ Rhinegeist Brewery
Oct 16 all-day

Date: Wednesday, October 16, 2024
Time: TBD
Location: Rhinegeist Brewery (1910 Elm St, Cincinnati, OH 45202)

Sip for a cause!

Each month, Rhinegeist highlights four local non-profit organizations that are brewing positive change in our community. Grab a pint on Wednesdays from 5-8 pm, receive a token with each pint purchase, explore each organization, and vote for your non-profit of choice by placing your token in their designated dropbox! You may also make a monetary donation in any dropbox.

At the end of the month, each organization receives a donation based upon the amount of “votes” they receive, while the organization with the most votes receives a bonus. So grab your pals, grab a pint, and support our local non-profits!

MORE INFORMATION

Oct
19
Sat
St. Louis Strollathon
Oct 19 all-day

Date: Saturday, October 19th, 2024
Time: TBD
Location: St. Louis, MO
Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (Contact Email)

MORE INFORMATION COMING SOON!

Make sure to follow the event on Facebook to stay up to date!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

So Cal Strollathon
Oct 19 @ 3:00 pm – 7:00 pm

Date: Saturday, October 19th, 2024
Time: 12-4 p.m. PT
Location: Whittier, CA
Event Chair: Sherri Brady (Contact Email)

MORE INFORMATION COMING SOON!

Make sure to follow the event on Facebook to stay up to date!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Nov
2
Sat
Florida Strollathon
Nov 2 all-day

Date: Saturday, November 2, 2024
Time: TBD
Location: West Melbourne, FL
Event Chair: Henry Perez (Contact Email)

MORE INFORMATION COMING SOON!

Make sure to follow the event on Facebook to stay up to date!

The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Nov
10
Sun
Capes and Crowns @ Watermark Country Club
Nov 10 @ 12:00 pm

Date: Sunday, November 10, 2024
Time: 12 p.m. ET
Location: Watermark Country Club (1600 Galbraith Ave SE, Grand Rapids, MI 49546)

More information coming soon!

Raise a Glass for Rett – Houston @ Houston Country Club
Nov 10 @ 6:00 pm – 10:00 pm

Date: Sunday November 10, 2024
Time: 5-9 p.m. CT
Location: Houston Country Club (1 Potomac Dr, Houston, TX 77057)

More information coming soon!

May
17
Sat
Enchanted Dreams Fantasy Gala for Rett @ The Grove
May 17 @ 4:00 pm

Date: Saturday, May 17, 2025
Time: 4 p.m. ET
Location: The Grove in Newport, ME

More information coming soon!