Events

May
23
Tue
Physician Panel: Answering Your Questions About Trofinetide
May 23 @ 1:00 pm – 2:00 pm
Date: Tuesday, May 23, 2023 Time: 1-2 p.m. ET INFORMATION & REGISTRATION 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. Our Panelists:
  • 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.
Jun
9
Fri
Rip it for Rett Golf Tournament @ Dunegrass Golf Club
Jun 9 @ 7:00 am
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! INFORMATION & REGISTRATION
Jun
22
Thu
2023 RettAway @ Morgan's Wonderland
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:
Jul
31
Mon
Norcina Charity Golf Outing @ Blue Hill Golf Course
Jul 31 @ 10:30 am – 8:30 pm
Date: Monday, July 31, 2023 Time: 10:30a Registration | 10:30a-12p Hot Breakfast | 12p Shotgun Start | 5:30-8:30p Dinner, Cocktails, and Prizes at Norcina Restaurant Location: Blue Hills Golf Course (285 Blue Hill Rd, Pearl River, NY 10965) & Norcina (186 N Main St, New City, NY 10956) Foursome: $940 Join us for Dinner & Open Bar $100 Golf Includes: Golf, Hot Breakfast, All Day Refreshments, Buffet Dinner at Norcina Restaurant, and Open Bar (Draft and Bottled Beer, House Wine, Well Liquor 5:30–8:30pm) Sponsorship Opportunities: Premium Sponsors ($5000) Large Banner at Norcina, Large Sign at breakfast, Beer Cart Sign, Sign at every Tee Breakfast Sponsors ($1500) Large Sign Hanging at Breakfast Beer Cart Sponsors ($500) Sign Hanging on Beer Cart at Golf Course Hole Sponsors ($125) Sign at Tee MORE INFORMATION
Aug
5
Sat
IRSF RettEd Day with UCSF Oakland Children’s CoE @ Camp Arroyo
Aug 5 @ 9:30 am – 4:00 pm
Date: Saturday, August 5, 2023 Time: 9:30 a.m. - 4 p.m. PT Location: Camp Arroyo (5535 Arroyo Rd, Livermore, CA 94550) 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. REGISTER & MORE INFORMATION
Sep
9
Sat
IRSF RettEd Day with UTSW Dallas CoE @ Rett Syndrome & Related Disorders Clinic
Sep 9 @ 9:00 am – 5:00 pm
Date: Saturday, September 9, 2023 Time: 9:00 a.m. - 5 p.m. CT (registration opens at 8:30a) Location: Rett Syndrome & Related Disorders Clinic (Dallas, TX) 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. REGISTER & MORE INFORMATION
Sep
25
Mon
Goals Fore Gracie Golf Tournament @ Thousand Oaks Golf Club
Sep 25 @ 9:00 am
Date: Monday, September 25, 2023 Time: Registration 9 a.m. | Shotgun Start 10:30 a.m. Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI) Event Chair: Rebecca & Andrew Visser (Contact Email) REGISTER & MORE INFORMATION Join the Visser family for their inaugural Goals Fore Gracie Golf Tournament in honor of their 4-year-old daughter with Rett syndrome, Gracie. Sponsorships, foursomes, and individual tickets are available now!
Sep
30
Sat
IRSF RettEd Day with Montefiore CoE @ Tri-State Rett Syndrome Center at Montefiore
Sep 30 @ 9:00 am – 5:00 pm
Date: Saturday, September 30, 2023 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:30a) Location: The Children's Hospital at Montefiore (Bronx, New York) 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. REGISTER & MORE INFORMATION
Oct
6
Fri
WUSM/SLCH Annual Family Education Symposium @ Washington University School of Medicine
Oct 6 @ 3:00 pm – 6:00 pm
Date: Friday, October 6, 2023 Time: 3:00 – 6 p.m. CT Location: Washington University School of Medicine or Virtually Download the Registration Flyer Register now for the Annual Family Education Symposium, part of the Rett Spectrum Conference Series brought to you by Washington University School of Medicine and Children's Hospital St. Louis. It's free to attend the symposium, but registration at the link below is requested. REGISTER & MORE INFORMATION
Oct
16
Mon
On the Ridge for Rett Golf Scramble @ Falcon Ridge Golf Course
Oct 16 @ 11:00 am
Date: Monday, October 16, 2023 Time: Registration 8 a.m. | Shotgun Start 10:00 a.m. Location: Falcon Ridge Golf Course (20200 Prairie Star Pkwy, Lenexa, KS 66220) Event Chair: Sam Evans (email) & Haley Douglass (email) REGISTER & MORE INFORMATION Join the Douglass and Evans family for their inaugural On the Ridge for Rett Golf Scramble in honor Vivian who has Rett syndrome. Sponsorships, foursomes, and individual tickets are available now!
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
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:
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!