Sep
30
Sat
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
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Date: Saturday, September 30, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: East Goshen Township Park (1661 Paoli Pike, West Chester, PA 19380) Event Chairs: Siobhann Bennett (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Oct
1
Sun
Oct 1 @ 2:00 pm – 5:00 pm
Date: Sunday, October 1st, 2023 Time: 1-4 p.m. CT Location: Environmental Learning Center (13550 Dakota Ave S, Savage, MN 55378) Event Chairs: Mary Kallstrom (Contact Email) Save the date to WALK N' ROLL with us! REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Oct
6
Fri
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
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Oct
7
Sat
Oct 7 @ 9:00 am – 12:00 pm
Date: Sunday, October 7th, 2023 Time: 9:00 a.m. - 12 p.m. Eastern Location: Thompson Park, Old Orchard Picnic Pavilion (805 Newman Springs Road, Lincroft, NJ 07738-1695) Event Chairs: Leslie Greenfield & Allison Fitzgerald (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Date: Saturday, October 7th, 2023 Time: 10:00 a.m.-1 p.m. ET Location: Matthew Henson State Park (13421 Georgia Ave, Silver Spring, MD 20906); park at the Matthew Henson Trail Park & Parking Area located behind the Global Mission Church Event Chairs: Toni Moore (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Date: Saturday, October 7th, 2023 Time: 10:00 a.m. CT Location: JCC St. Louis (2 Millstone Campus Drive, St. Louis, MO 63146) Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Oct
16
Mon
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!
Categories: homepage Special Events - Golf Tournaments
Oct
21
Sat
Date: Saturday, October 21st, 2023 Time: 12-4 p.m. PT Location: Whittier High School (12417 Philadelphia St, Whittier, CA 90601) Event Chair: Sherri Brady (Contact Email) The So Cal Strollathon is back this Fall! Save the date to join us on Saturday, October 21st for our 21st annual stroll at Whittier High School. REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Oct
22
Sun
Date: Sunday, October 22nd, 2023 Time: 1:00 p.m. - 4 p.m. Central Location: Gussie Field Watterworth Park (2610 Valley View Ln, Farmers Branch, TX 75234) Event Chairs: Vanessa Peace (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Nov
4
Sat
Date: Saturday, November 4, 2023 Time: 9:30 a.m. ET Location: West Melbourne’s Space Coast Field of Dreams (3053 Fell Road, West Melbourne,FL 32904) Event Chair: Henry Perez (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
Date: Sunday, November 4th, 2023 Time: 10:00 a.m. - 2 p.m. Pacific Location: Vasona Lake County Park (333 Blossom Hill Rd., Los Gatos, CA 95032) Event Chairs: Rachael Linford, Melissa Nues & Natalie Gifford (Contact Email) REGISTER & MORE INFORMATION 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.
Categories: homepage Special Events - Strollathons
May
13
Mon
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
Categories: homepage Special Events - Golf Tournaments
Jun
19
Wed
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
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.
Categories: homepage Special Events - Strollathons
Sep
10
Tue
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.
Categories: Education Slider homepage Webinar
Sep
21
Sat
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.
Categories: homepage Special Events - Strollathons
Sep
28
Sat
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.
Categories: homepage Special Events - Strollathons
Oct
5
Sat
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.
Categories: homepage Special Events - Strollathons
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.
Categories: homepage Special Events - Strollathons
Oct
6
Sun
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.
Categories: homepage Special Events - Strollathons
Oct
14
Mon
Date: Monday, October 14, 2024 Time: 10am CT Location: Falcon Ridge Golf Course - 20200 Prairie Star Parkway, Lenexa, KS 66220 Event Chairs: Sam (email) and Katie (email) Evans Join us for a rare opportunity at a stress-free Monday on the golf course to support a great cause! We'll cover breakfast, lunch, beverages, and snacks. All you need to do is show up for a day of golf, contests, raffles, and prizes!
Categories: homepage Special Events - Golf Tournaments
Oct
19
Sat
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.
Categories: homepage Special Events - Strollathons
Oct
24
Thu
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.
Categories: Education Slider homepage Webinar
Oct
26
Sat
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.
Categories: homepage Special Events - Strollathons
Nov
2
Sat
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.
Categories: homepage Special Events - Strollathons
Nov
16
Sat
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
Categories: Ed Day Education Slider homepage
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