Events

Jul
28
Wed
RettEd: Gene Therapy in Rare Disease
Jul 28 @ 1:00 pm
As a rare disease community, we can learn a lot from others further down the road of gene replacement therapy. In this informative conversation with IRSF's CSO, Dr. Dominique Pichard, you'll hear from P.J. Brooks, PhD, Program Director for the Office of Rare Disease Research at the NIH's Center for Advancing Translational Sciences. We'll also hear from CureSMA's Chief Scientific Officer, Jill Jarecki, PhD, who will share what CureSMA learned from their FDA-approved gene therapy clinical trial experience. Join us Wednesday, July 28 at 1 p.m. EDT. Takeaways from this RettEd: - Understand the potential for gene replacement therapy for single-gene disorders like Rett syndrome and learn what is involved in delivering complex treatment molecules to the affected cell. - Understand what NCATS is doing to accelerate clinical trials in rare diseases by moving beyond "one disease at a time" approaches. - Get perspective from another rare disease foundation's gene therapy clinical trial experience. Information & Registration
Nov
10
Wed
RettEd: Next Level Nutrition
Nov 10 @ 4:30 pm

Next Level Nutrition

  Getting proper nutrition is especially challenging for those with Rett. The news is always filled with information on special diets, allergies, and food sensitivities, but how do you sift through it? How do you decide what’s best for your loved one with Rett? This interactive webinar with parent panel and dietician expert Suzanne Geerts can help!  Date: Wednesday, November 10, 2021 Time: 4:30pm Registration is free but required. Registration & Information Submit your questions when you register. International Rett Syndrome Foundation's educational programming is made possible through a sponsorship from ACADIA Pharmaceuticals, Taysha Gene Therapies, and Novartis Gene Therapy.
Dec
8
Wed
Retted: Occupational Therapy Strategies: Maximizing Hand Function + Feeding
Dec 8 @ 1:00 pm

Occupational Therapy Strategies: Maximizing Hand Function + Feeding

People with Rett often have difficulty controlling hand movements, which can lead to frustration in using communication devices and participating in adapted recreation and many daily activities. Feeding in Rett patients can also be challenging because of decreased motor skills when chewing and swallowing as well as communication issues in relaying what they want. If you're facing either of these issues, finding a trained therapist who understands Rett is key to creating reasonable goals, managing expectations, and perhaps recovering gains lost during a regressive phase of Rett. Todd Levy and Emily Scott from Children's Hospital of Philadelphia and IRSF Center of Excellence will discuss strategies they've seen work in Rett patients and outline the criteria to look for in finding an occupational therapist that will meet your loved one's needs. Information & Registration
Jan
11
Tue
RettEd: Music Through Our Ears and Our Hands
Jan 11 @ 1:00 pm

Music Through Our Ears and Our Hands

Date: January 11, 2022 Time: 1pm Eastern Time Music Therapy: Neuroscience; Clinical Goals; Practical How-To's We know our children have a strong affiliation to music. They have their favorites. It is often a go-to to calm, focus, or motivate them. Why? In this RettEd, we will hear from professionals and parents about the importance of Music Therapy in Rett syndrome. And how does Music Therapy happen in Rett differently than traditional MT? How might you get it going in your everyday life or through an online music group? You will takeaway this and much more. Information & Registration
Jan
27
Thu
Webinar: Learn About the Externally-Led Patient-Focused Drug Development Meeting for Rett Syndrome
Jan 27 @ 3:00 pm

Join IRSF and RSRT on Tuesday, January  27, 2022 from 3 to 4 pm EST for a community webinar to discuss the upcoming March 11, 2022 Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on Rett syndrome.

Discover why your voice is critical to inform the development and review of new drugs to treat Rett syndrome. Come learn how you can make your voice heard as a participant on March 11th. Learn more about the meeting with guest speakers:
  • Larry Bauer, RN, MS, Sr. Regulatory Drug Expert, Hyman, Phelps, & McNamara, PC
  • James Valentine, JD, MHS, Senior Associate, Hyman, Phelps & McNamara, PC
Register
Jul
26
Tue
RettEd | Transitioning into Adulthood, Part 1: Medical Transition
Jul 26 @ 1:00 pm – 2:00 pm

Date: July 26, 2022 Time: 1-2 p.m. Eastern Time The first in a 3-part series on topics pertaining to adulthood in Rett syndrome, this session will provide strategies and resources to empower and prepare you and your young adult for the transition from pediatric to adult medical care. Medical transition is not a one-size-fits-all process, and this workshop-style talk will empower your family to have the best, most family-centered transition of care possible. The session will include stories from other caregivers and individuals in the Rett community and further expand on topics and questions from the session at IRSF’s ASCEND 2022 Rett Syndrome National Summit. Speakers: Jessica Nickrand is a program manager at the Child Neurology Foundation (CNF). She supports CNF’s Transition of Care Program—its largest and most diverse program—which helps to support youth, families, and child neurology teams in the medical transition. Jessica holds a Ph.D. from the University of Minnesota and is passionate about developing programs that empower young adults and their caregivers to effect systems-level change.  Paige Nues is the Director of Family Empowerment for the International Rett Syndrome Foundation (IRSF). Since her daughter, Katie’s diagnosis of Rett syndrome in 2003, Paige has worked diligently to build bridges between patient families, clinicians, scientists, and industry, both at IRSF and as a parent founder of Katie’s Clinic for Rett and Related Disorders at UCSF Benioff Children’s Hospital. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION 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.
Aug
1
Mon
RettEd | What Comes Next? The FDA Regulatory Process from NDA to FDA Decision and Beyond
Aug 1 @ 3:00 pm – 4:00 pm
Date: Monday, August 1st, 2022 Time: 3 p.m. EDT With the recent news about trofinetide’s new drug application (NDA) submitted to the FDA, we are entering a new space for Rett syndrome: FDA Review. While this is the first time for Rett, it won’t be the last, and our community has a lot of great questions: “What does submitting an NDA mean? What’s the next step? How much longer? When will we have an approved treatment? How will my loved one get access to this treatment?” To answer these questions and many more, IRSF is excited to bring back FDA expert, James Valentine, Esq., to join IRSF’s Chief Science Officer, Dr. Dominique Pichard for a live webinar. Join them as they review the FDA regulatory process, share what happens between a successful Phase 3 clinical trial and an FDA decision about a drug or therapeutic, and explain what could come next for trofinetide and the Rett community. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION 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
27
Tue
RettEd Webinar | Transitioning into Adulthood, Part 2: Lifecare Planning
Sep 27 @ 1:00 pm – 2:00 pm
Date: September 27, 2022 Time: 1-2 p.m. Eastern Time The second in our 3-part series on topics pertaining to adulthood in Rett, this online workshop focuses on preparing for life post-high school when school services and support conclude. Geared for parents, guardians, and family members of the older teen and adult with Rett syndrome, this session will cover:
  • Legal Planning: Special Needs Trusts, Letter/Memorandum of Intent, Guardianship
  • Financial Planning: How to fund a Special Needs Trust, ABLE accounts, and more
  • Benefit Planning: Finding and accessing federal benefits like SSI & SSDI, Medicaid, Waivers, etc.
  • Defining Your Replacement Team: What happens when you can no longer provide direct care alone?
Speaker: Kacy Seitz is a financial planner with a Northwestern Mutual practice that serves nearly 500 special needs families in 28 states. As a special needs parent to 12-year-old Hudsyn (a friend of Samantha Brant’s daughter, Macy!), Kacy is all-too-familiar with the common fears you may have in learning about the topic of long-term planning for your child. In fact, she opened her practice in 2013 because she had difficulty finding good, sound advice to help her develop a solid plan for her daughter. Now, Kacy has personally trained and mentored hundreds of other advisors on how to do this type of planning for their clients, focusing on helping special needs families with proper financial planning throughout their lifetimes. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, for helping IRSF provide educational resources and support to families affected by Rett syndrome. INFORMATION & REGISTRATION 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.
Dec
6
Tue
RettEd Webinar | Transitioning into Adulthood, Part 3
Dec 6 @ 1:00 pm – 2:00 pm
Date: December 6, 2022 Time: 1-2 pm ET INFORMATION & REGISTRATION Quality of Life Options by Real-Life Families Every individual with Rett syndrome is unique and while our paths may be similar, no family’s Rett journey is the same. This is especially true as our children grow into adults; while they don’t outgrow their need for us, there is no one ideal or specific policy roadmap to help navigate our loved ones’ Rett journey into adulthood. But with proper planning, goals, and vision, we can ensure this journey leads to an enriched adulthood. In the 3rd talk in our 3-part series on navigating adulthood in Rett syndrome, join us for a candid conversation with families who have navigated this process to provide the best quality of care, constructing meaningful lives for their adult loved ones while caring for themselves too. Learn about what you need to change, what needs to be secured, and what creative living and life options are out there for your adult with Rett syndrome from families who have been through this before. The panel includes:
  • Paul and Janelle Jochim, parents to Jill (age 46)
  • Megan Ladenburger and Mom Shanna Sowers, sister and mom to Brittany (age 34)
  • Theresa Bartolotta, mom to Lisa (age 33)
  • Moderator: Paige Nues, IRSF Family Empowerment Director and mom to Katie (age 20)
  • Special Guest: Sheila Lullo, Special Projects Coordinator of Quality Outcomes at Clearbrook in Illinois, a provider of community-based residential options, day programs, and more to adult individuals with special needs.
Join us for the webinar as our panel shares their real-life experiences and the process they went through in choosing Day Programs, Self-Directed Programming, Residential Care, and more. Thank you to our RettEd Empowerment Sponsor, Acadia Pharmaceuticals, 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.
Apr
28
Fri
The Great Rett Shootout 2023 @ Blackwood Sporting Co.
Apr 28 @ 2:00 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. INFORMATION & REGISTRATION
Apr
29
Sat
Cammy Can’s 11th Annual Cinderella Story @ The Farehouse Market
Apr 29 @ 6:00 pm – 11:00 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! INFORMATION & REGISTRATION
May
8
Mon
Mark Charamella Memorial Golf Outing & Dinner @ Westover Country Club
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.  INFORMATION & REGISTRATION
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
Jul
15
Sat
POUND Out Rett 2023 @ IBEW Local 1
Jul 15 all-day
Date: Saturday, July 15, 2023 Time: 12-4 p.m. (Check-in 12p, POUND 1p, Happy Hour 2-4p) Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110) Channel your inner rockstar in POUND® - an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose! Come rock out workout, enjoy refreshments, vendors, a silent auction, and more! INFORMATION & REGISTRATION
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
Fill Your Freezer for Rett 2023 @ Online
Sep 9 all-day
The Morrison Family is hosting a pig raffle fundraiser in honor of their daughter, Savannah, who has Rett syndrome. Each prize is for half of a processed pig! Two prizes are available, and one person can win both prizes. Tickets are now available for purchase and the drawing will be hosted on Saturday, September 9th. *Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593
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
Pittsburgh Strollathon @ Buffalo Creek Nature Park
Sep 9 @ 10:00 am – 2:00 pm

Date: Saturday, September 9, 2023 Time: 10:00 a.m. - 2 p.m. Eastern Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre Gray and Kati Gray (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.
Nebraska Strollathon @ Yanney Heritage Park
Sep 9 @ 2:00 pm – 5:00 pm
Date: Saturday, September 9th, 2023 Time: 1:00 p.m. - 4 p.m. CT Location: Yanney Heritage Park - ERC Building (2020 W 11th St, Kearney, NE 68845) Event Chairs: Jacy Horst, Megan Ladenburger, & Elly Gullion (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.
Sep
23
Sat
Cincinnati RettConnect Picnic @ Makino Park
Sep 23 @ 10:00 am – 1:00 pm
Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. ET Location: Makino Park (6100 Kopfler Ct, Mason, OH 45040) REGISTER & MORE INFORMATION IRSF’s RettConnect is a free picnic and outing for families to build connections with other members of the Tristate Rett syndrome community. Registration is free but required.
Raleigh Strollathon @ Crowder County Park
Sep 23 @ 10:00 am – 1:00 pm

Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: Crowder County Park (4709 Ten-Ten Road, Apex, NC 27539) Event Chairs: Gwen Noecker  (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.
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
Philadelphia Strollathon @ East Goshen Township Park
Sep 30 @ 10:00 am – 1:00 pm

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.
Oct
1
Sun
Minnesota Strollathon @ Savage Environmental Learning Center McColl Pond
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.
Oct
7
Sat
New Jersey Strollathon @ Thompson Park, Old Orchard Picnic Pavilion
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.
Maryland Strollathon @ Matthew Henson State Park
Oct 7 @ 10:00 am – 2:00 pm
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.
St. Louis Strollathon @ JCC St. Louis
Oct 7 @ 11:00 am – 2:00 pm
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.
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!
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