Events

Jun
18
Tue
2024 IRSF Rett Syndrome Scientific Meeting @ The Westin Westminster
Jun 18 – Jun 19 all-day
Date: June 18-19, 2024 Time: All Day Location: Westminster, Colorado LEARN MORE The research community is invited to join us in Colorado for the 2024 IRSF Rett Syndrome Scientific Meeting next June! Part of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome. Thank you to our sponsors: Presenting Sponsor: Platinum Sponsors:
Bronze Sponsors:
Anavex Life Sciences
DepYmed
Jun
19
Wed
ASCEND 2024 Rett Syndrome National Summit (Family Conference) @ 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. 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:
Bronze Sponsors:
Anavex Life Sciences
Anovo
Sep
7
Sat
Pittsburgh Strollathon @ Buffalo Creek Nature Park
Sep 7 @ 10:00 am
Date: Saturday, September 7, 2024 Time: 10:00 a.m. ET Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre & Kati Gray (Contact Email) REGISTER TODAY! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Sep
10
Tue
RettEd Webinar | Transitioning with Confidence: Enhancing Communication in Academic Settings
Sep 10 @ 4:00 pm – 5:00 pm
Date: Tuesday, September 10th Time: 4-5 pm ET INFORMATION & REGISTRATION Transitioning with Confidence: Enhancing Communication in Academic Settings The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session focusing on supporting students’ communication needs during school transitions. During this webinar, Emily Cleer Estades, a licensed SLP and mother to a 24-year-old with Rett syndrome, will share her insights from both professional and personal perspectives. She will discuss challenges and successes, offering advice on advocating for students and ensuring successful IEP and transition meetings. Then, Andrea Etkie, also a licensed SLP and Rett syndrome researcher, will present evidence-based strategies and innovative approaches. She will emphasize the importance of including students in transition discussions to ensure their voices are heard and their needs are met. This session aims to combine professional expertise with personal experience to enhance communication support during academic transitions for students of all ages with Rett syndrome, with emphasis on preparing for Adulthood Transition conversations that begin around age 14. Join us for an informative and engaging session! Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Sep
21
Sat
Michigan Strollathon @ Marshbank Park
Sep 21 @ 10:00 am – 1:00 pm
  Date: Saturday, September 21, 2024 Time: 10:00 a.m. - 1 p.m. ET Location: Marshbank Park (2805 Hiller Road, West Bloomfield, MI 48324) Event Chairs: Lisa Fenberg & Kate Ficano (Contact Email) REGISTER TODAY! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Sep
28
Sat
Nebraska Strollathon @ Yanney Park
Sep 28 @ 12:00 pm
Date: Saturday, September 28, 2024 Time: 11 a.m. CT Location: Yanney Park (2020 W 11th St, Kearney, NE 68845) Event Chairs: Elly Gullion REGISTER TODAY! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Oct
5
Sat
New Jersey Strollathon @ Thompson Park
Oct 5 @ 10:00 am – 2:00 pm
Date: Saturday, October 5, 2024 Time: 10 a.m. - 2 p.m. ET Location: Thompson Park (805 Newman Springs Rd, Lincroft, NJ 07738) Event Chairs: Leslie Greenfield & Allison Fitzgerald LEARN MORE & REGISTER The Strollathon is a nationwide IRSF fundraiser that brings together local communities to raise critical funds towards treatment and a cure for Rett syndrome. For more than 20 years, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Maryland Strollathon @ Matthew Henson State Park
Oct 5 @ 12:00 pm – 4:00 pm
Date: Saturday, October 5th, 2024 Time: 12:00 p.m.-4 p.m. ET Location: Matthew Henson State Park (13421 Georgia Ave, Silver Spring, MD 20906) Event Chairs: Toni Moore & James Borris, Daniel Jackson, and Cathy Borris-Hale LEARN MORE & REGISTER 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
6
Sun
Minnesota Strollathon @ Savage Environmental Learning Center (ELC)
Oct 6 @ 1:45 pm – 5:00 pm
Date: Sunday, October 6th, 2024 Time: 12:45-4pm CT Location: Savage Environmental Learning Center (13550 Dakota Ave, Savage, MN 55378) Event Chairs: Mary Kallstrom (Contact Email) REGISTER TODAY! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Oct
19
Sat
St. Louis Strollathon @ The JCC - St. Louis
Oct 19 @ 2:00 pm
Date: Saturday, October 19th, 2024 Time: 1pm CT Location: The JCC - St. Louis (2 Millstone Campus Dr. St. Louis, MO 63146) Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (Contact Email) REGISTER TODAY! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Oct
24
Thu
RettEd Webinar | Epilepsy Treatments in Rett Syndrome
Oct 24 @ 1:00 pm – 2:00 pm
Date: Thursday, October 24th Time: 1-2 pm ET REGISTER NOW Epilepsy Treatments in Rett Syndrome The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome. Guest Speaker: Robin Ryther, M.D., Ph.D., Associate Professor, Pediatric Epilepsy; Director, Rett Spectrum Clinic; Division of Pediatric and Developmental Neurology; Pediatric Epilepsy Center at Washington University and St. Louis Children's Hospital Department of Neurology This session will include a discussion of medication options but also non-medication options including special diets, surgical options, and supplements such as CBD oil. Dr. Ryther will also review special circumstances specific to Rett Syndrome to be considered. This information is appropriate for patients with Rett syndrome of all ages. Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast 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 a medical condition.
Oct
26
Sat
So Cal Strollathon
Oct 26 @ 3:00 pm – 7:00 pm
Date: Saturday, October 26th, 2024 Time: 12-4 p.m. PT Location: Whittier, CA Event Chair: Sherri Brady (Contact Email) LEARN MORE & REGISTER 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
2
Sat
Florida Strollathon @ Space Coast Field of Dreams
Nov 2 @ 10:30 am
Date: Saturday, November 2, 2024 Time: Registration starts at 10:30 a.m.  |  Stroll starts at 1:00 p.m. Location: West Melbourne, FL Event Chair: Henry Perez (Contact Email) REGISTER TODAY! 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
16
Sat
IRSF RettEd Day @ CHOP
Nov 16 @ 9:00 am – 5:00 pm
Date: Saturday, November 16, 2024 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:00a) Location: Children's Hospital of Philadelphia 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. LEARN MORE & REGISTER
Apr
5
Sat
IRSF RettEd Day @ Nationwide Children's Hospital
Apr 5 all-day
Date: Saturday, April 5, 2025 Time: All Day Location: Nationwide Children's Hospital (Columbus, Ohio) 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. MORE INFORMATION COMING SOON!
May
3
Sat
IRSF RettEd Day @ Children's Hospital Los Angeles
May 3 all-day
Date: Saturday, May 3, 2025 Time: All Day Location: Children's Hospital Los Angeles (Los Angeles, CA) 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. MORE INFORMATION COMING SOON!
Jul
9
Wed
2025 RettAway
Jul 9 – Jul 12 all-day
Date: July 9-12, 2025 Location: San Diego Area, California (Carlsbad & Oceanside) 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. MORE INFORMATION COMING SOON!
Sep
13
Sat
IRSF RettEd Day @ Boston Children's Hospital
Sep 13 all-day
Date: Saturday, September 13, 2025 Time: All Day Location: Boston Children's Hospital (Boston, MA) 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. MORE INFORMATION COMING SOON!