Events

Oct
15
Sat
Bee The Light 5K
Oct 15 @ 9:00 am

Date: Saturday, October 15th, 2022
Time: 9am-12pm ET
Address: Southeastway Park, 5624 S. Carroll Rd, New Palestine, IN 46163

Register and Learn More

Event Info:

A great opportunity to run or walk in the cool fall weather, the Bee the Light 5K is the first annual race sponsored by The Shelby Foundation for Kindness Delivered. This exciting event on a paved trail will highlight the family-friendly environment of Southeastway Park which also includes bike trails, a playground, shelters, an education center, wooded areas, and a pond.

This race is held in honor of Shelby Kraft, who passed away in early 2022, and 100% of registration proceeds will be donated to the International Rett Syndrome Foundation. Rett Syndrome is a neurologic disorder, primarily affecting girls and women, which can lead to significant disability. Shelby is also the namesake of Kindness Delivered, an organization that delivers kindness in Jesus’ name throughout the community. For more information on Shelby and Kindness Delivered, visit kindnessdelivered.org.

Oct
17
Mon
Hannah’s Hope Golf Tournament
Oct 17 @ 7:00 am


Date: Monday, October 17th, 2022
Time: Registration 7:00 am ET; First flight tee off 8:30 am ET
Location: Hillcrest Golf & Country Club (4011 N Boston Ave, Lubbock, TX 79415)
Continental breakfast items available and lunch will be provided

We invite you to take part in the First Annual Hannah’s Hope Golf Tournament on October 17, 2022 at Hillcrest Country Club. This tournament will benefit the International Rett Syndrome Foundation in honor of Hannah Hooks.

The inspiration behind our tournament is 10-year-old Hannah Hooks. Hannah lives in Lubbock and is in 5th grade at Lubbock-Cooper West Elementary. Hannah was born with a rare disease called Rett Syndrome. Rett syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of the child’s life. In April of 2022 IRSF hosted their National Science and Family Summit and presented an update on a treatment for Rett Syndrome. Rett Syndrome has been treated in mice and there are multiple clinical trials going on throughout the world to bring a cure to the males and females living with Rett. A treatment for Rett will also lead to breakthroughs in many other diseases and disorders. In order to continue research, organizations like International Rett Syndrome Foundation need funds to contribute to the many companies who are seeking a treatment.

Information & Registration

Oct
21
Fri
Rett Spectrum 5th Annual Family Education Symposium
Oct 21 @ 3:00 pm

Date: Friday, October 21, 2022
Time: 3:00 p.m. CT (entry in-person/zoom at 2:45p)
Location: Washington University School of Medicine (660 S Euclid Ave, St. Louis, MO 63110)

INFORMATION & REGISTRATION

Oct
22
Sat
IRSF RettEd Day at Kennedy Krieger Institute
Oct 22 @ 8:00 am – 4:00 pm

Date: October 22, 2022
Time: 8:00 a.m. – 4 p.m. Eastern Time
Location: Kennedy Krieger Institute’s Arnold J. Capute, MD, MPH Conference Center – Eighth Floor (1741 Ashland Avenue, Baltimore, MD 21205)

Our RettEd 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

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

So Cal Strollathon
Oct 22 @ 12:00 pm – 4:00 pm

Date: Saturday, October 22nd, 2022
Time: 12-4 p.m. PT
Location: Whittier High School (12417 Philadelphia St, Whittier, CA 90601)
Event Chair: Sherri Brady (Contact Email)

The So Cal Strollathon is back and in-person this Fall! Save the date to join us on Saturday, October 22nd for our 20th annual stroll at Whittier High School.

REGISTER & MORE INFORMATION

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
30
Sun
Dallas Strollathon
Oct 30 @ 1:00 pm – 4:00 pm

Date: Sunday, October 30th, 2022
Time: 1:00 p.m. – 4 p.m. Central
Location: Gussie Field Watterworth Park (2610 Valley View Ln, Farmers Branch, TX 75234)
Event Chairs: Vanessa Peace  (Contact Email)

REGISTER & MORE INFORMATION

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
5
Sat
Florida Strollathon
Nov 5 @ 9:30 am

Date: Saturday, November 5, 2022
Time: 9:30 a.m. ET
Location: Tradewinds Park, Atala Shelter (3600 W. Sample Rd, Coconut Creek, FL 33073)
Event Chair: Henry Perez (Contact Email)

REGISTER & MORE INFORMATION

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
12
Sat
3rd Annual Raise a Glass for Rett Gala
Nov 12 @ 8:00 pm – 9:00 pm

Date: Saturday, November 12th, 2022
Time: 8-9 p.m. ET
Location: Virtual Livestream + In-Person Viewing Parties across the US

Join us for the 3rd Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett and Kathryn & Luke Kissam!

GET VIRTUAL TICKETS

Grab your commemorative beer or wine glass and join us for an evening of stories from your Rett community, inspiring updates on science and research advancements, and the opportunity to support Rett families all over the world. This special event will be broadcast live from New York City and reach thousands across the globe. Over the past two years, our donors, sponsors, and viewers have raised more than $400,000 to empower families and accelerate research towards a cure.

Go ALL IN! Get your ticket to watch from your living room or learn more about a viewing party near you!

Got your tickets? Make sure to let us know you’re coming on our Facebook Event Page to get up-to-date information and connect with other attendees!

For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Jackie Ventura at [email protected].

Dec
6
Tue
RettEd Webinar | Transitioning into Adulthood, Part 3
Dec 6 @ 1:00 pm – 2:00 pm

Date: December 6, 2022
Time: 1-2 pm ET

Transitioning into Adulthood Series:
Our children grow up, and while they don’t outgrow their need for us, they (and you!) can enjoy an enriched adulthood with proper planning, goals and vision. Please join us for this 3-part series as we look closely at what needs to change, what needs to be secured, and what creative living and life options are out there for your adult with Rett syndrome.

Part 3 session description coming soon!

Jun
22
Thu
2023 RettAway
Jun 22 – Jun 25 all-day

Date: June 22-25, 2023
Location: Morgan’s Wonderland Accessible Theme Park (5223 David Edwards, San Antonio, TX 78233)

Save the date to join us at Morgan’s Wonderland Accessible Theme Park! We’ll be spending the day at Morgan’s Inspiration Island Splash Experience, a tropical-island paradise with colorful splashpads, a river boat adventure ride, and more!

More information coming soon!