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.
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!
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.
Date: Tuesday, May 23, 2023
Time: 1-2 p.m. ET
In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials.
During this 1-hour live webcast, join IRSF and a panel of physicians who treat individuals with Rett syndrome. As principal investigators for the trials, our panel has firsthand knowledge of the potential benefits and side effects of trofinetide. They’ll answer your pre-submitted questions, share their anecdotal learnings, and provide information important for any parent considering DAYBUE for their child.
- Dr. Tim Benke, Professor of Pediatrics, Pharmacology, & Neurology at the University of Colorado/Children’s Hospital Colorado
- Dr. Robin Ryther, Director of the Rett Spectrum Clinic at Washington University School of Medicine
The panel will be moderated by Carmen Luna, IRSF Clinical Network Manager, and include questions submitted by our community.
Medical Disclaimer: All information, content, and material presented in this webinar is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding your specific medical condition.
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 24 and the late-breaking abstract submission window will be open April 5-May 5.
Thank you to our sponsors:
Date: Friday, June 9th, 2023
Location: Dunegrass Golf Club (200 Old 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!
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
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!