Siera’s 35th Birthday Bash for IRSF
Jan 28 @ 5:00 pm

Siera’s 35th Birthday Bash for IRSF

Date: Saturday, January 28th, 2023
Time: 5pm-11pm
Location: St. Louis Moose Lodge 1566, 811 Michigan Ave, St Louis MI 48880

Come help us celebrate Siera’s 35th birthday while raising funds for IRSF. Enjoy an evening of entertainment, dinner & cash bar, live & silent auction and more! All ages welcome.

To RSVP, please contact Lisa Rushin at: 989-285-5994.

Unable to join but want to donate- you may do so here:

All proceeds to benefit IRSF.

Roses for Rett 2023
Feb 25 @ 6:30 pm

Date: Saturday, February 25, 2023
Time: 6:30pm to 10:30pm PT
Location: The Mill Casino (3201 Tremont Ave, North Bend, OR 97459)

Join us for the 1st annual Roses for Rett, a night of dancing and music with light appetizers, a hosted wine and cash bar as well as a silent auction. All proceeds to benefit IRSF in honor of their daughter, Sabre Rose.

“Sabra Rose was born into this world much the same as all little girls – her wiggles and smiles stole our hearts. However, when she was 2.5, we noticed a major regression and loss of skills. Shortly after that we received a diagnosis of Rett syndrome for Sabra. Our lives have been turned upside down but we have HOPE and research is promising. Thank you for your support to give us a ray of hope for our Sabra Rose!”

Please direct any questions to Rachel Hampton at [email protected]


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*


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


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.


The Great Rett Shootout 2023
Apr 28 @ 1:00 pm

Date: Friday, April 28, 2023
Time: 12 p.m. Registration | 1:00 p.m. Event Start
Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304)

It’s that time again! Let’s break some clays and go ALL IN to create a world without Rett! Gather your friends and family for an incredible day of tournament skeet shooting, live music, raffles, crawfish boil, and tons of fun to support this very special cause.


MRSF Rett Ed Day 2023
Apr 29 @ 8:00 am – 4:30 pm

Date: Saturday, April 29, 2023
Time: 8 a.m. – 4:30 p.m. CT
Location: River Park Plaza (10 River Park Plaza Saint Paul, MN 55107)

After a two-year break, WE ARE BACK and ready to share some exciting updates on drug trials and gene therapy!

  • The Midwest Rett Syndrome Foundation (MRSF) welcomes families and caregivers for a day of learning and networking. We have real treatments coming to help our children!
  • This full day of adult conversation will focus on research updates and local opportunities to get the most out of our Center of Excellence at Gillette Children’s.
  • There will be information tables, giveaways and special introductions throughout the day!

Download the informational flyer here.


Cammy Can’s 11th Annual Cinderella Story
Apr 29 @ 5:00 pm – 10:00 pm

Date: Saturday, April 29, 2023
Time: 5-10 p.m. CT
Location: The Farehouse Market (600 W Chicago Ave, Chicago, IL 60654)

We’re excited to be back at The Farehouse Market for a night of food & drink, a live and silent auction, and the chance to help us celebrate Cammy’s 14th Birthday!


Golf Fore a Cure 2023
May 6 @ 8:00 am

Date: Saturday, May 6, 2023
Time: 7:00 am Registration | 8:00 am Shotgun Start
Location: Cleveland Heights Golf Course (2900 Buckingham Ave, Lakeland, FL 33803)

Join us for the 6th annual Golf Fore a Cure!

“Golf Fore a Cure is so very near and dear to our hearts. Each year, the passion grows deeper as each year, we are closer to treatments and hopefully a cure for Rett syndrome. We couldn’t be more excited and hopeful for the recent announcement from Neurogene, Inc. regarding the very first gene therapy clinical trial in the US for Rett syndrome. This is why we do what we do!” – Karli Hughes, mom to Emily and event chair

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


Mark Charamella Memorial Golf Outing & Dinner
May 8 @ 11:00 am

Date: Monday, May 8, 2023
Time: Registration 11:00 am | Shotgun Start 12:15 pm | Tailgate & Dinner 5 pm
Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403)

Join us for the 10th annual Mark Charamella Memorial Golf Outing & Dinner!

“This will be the 10th year of hosting the Mark Charamella Memorial Golf Outing & Dinner. I know that my Dad would be so proud of his family, friends, and colleagues who come from near and far to join us year after year to raise money for Rett syndrome. Each year, when we gather for a fun day on the golf course, I definitely feel his presence and know this is exactly what he would want us to be doing. Please join us for our 10th year and our goal of raising $35,000 in honor of a great man!”
– Deb McLaughlin, Event Chair, daughter to Mark and sister to Deirdre

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


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

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


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:



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!