Events

Apr
22
Sat
Run for Rett 2023
Apr 22 @ 7:00 am

Date: Saturday, April 22, 2023
Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run
Location: Busse Woods – North, Grove #4, Elk Grove, IL (Enter Busse Woods off of Higgins Road – 1.1 miles east of Route 53)

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.

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

INFORMATION & REGISTRATION

Apr
24
Mon
Hannah’s Hope Golf Tournament
Apr 24 @ 7:00 am

**RESCHEDULED**

Date: Monday, April 24, 2023
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 rescheduled for April 24, 2023 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

Jun
5
Mon
2023 IRSF Rett Syndrome Scientific Meeting
Jun 5 – Jun 7 all-day

Date: June 5-7, 2023
Time: All Day
Location: Nashville, Tennessee

LEARN MORE

The research community is invited to join us in Nashville once again for the 2023 IRSF Rett Syndrome Scientific Meeting next June! The goal of this meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from all around the world. Together, we will continue to break down barriers and discuss ways to leverage learning in the lab to be rapidly deployed to the clinic. The meeting will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome.

Early bird pricing ends March 15 and the late-breaking abstract submission window will be open April 5-May 5.

Thank you to our sponsors:

Presenting Sponsor:

Gold Sponsor:

Silver Sponsor:

Bronze Sponsor:

 

 

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)
For Event Information & FAQs, CLICK HERE.

IRSF’s RettAway is a destination vacation for families to spend time together and build connections with other members of our Rett community. It’s not a conference – there are no meetings or educational presentations. It’s an exclusive opportunity for your family to have fun together in a location that understands the challenges and joys of caring for a loved one with Rett syndrome.

This year’s RettAway brings us back to Morgan’s Wonderland in San Antonio, Texas! Join us for a long weekend of fun in the sun at this accessible theme park, including an afternoon at Morgan’s Inspiration Island Splash Experience reserved just for Rett families. There will be ample time to catch up with friends new and old throughout the weekend or explore all the city has to offer. No matter where you are on your Rett journey, there will be activities, support, and bonds to be made at this June’s RettAway!

REGISTRATION & HOTEL INFORMATION

Already registered?

Make sure to RSVP “Going” on the Facebook event page to stay up to date on deadlines, information, and to make plans to connect with other families!

Sponsored by:

A FIRST FOR RETT: FDA approves Trofinetide for the treatment of Rett syndrome!
It’s Giving Tuesday - Go ALL IN for Rett!

A FIRST FOR RETT: FDA approves Trofinetide for the treatment of Rett syndrome!