Date: Saturday, October 15th, 2022
Time: 9am-12pm ET
Address: Southeastway Park, 5624 S. Carroll Rd, New Palestine, IN 46163
Event Info:
A great opportunity to run or walk in the cool fall weather, the Bee the Light 5K is the first annual race sponsored by The Shelby Foundation for Kindness Delivered. This exciting event on a paved trail will highlight the family-friendly environment of Southeastway Park which also includes bike trails, a playground, shelters, an education center, wooded areas, and a pond.
This race is held in honor of Shelby Kraft, who passed away in early 2022, and 100% of registration proceeds will be donated to the International Rett Syndrome Foundation. Rett Syndrome is a neurologic disorder, primarily affecting girls and women, which can lead to significant disability. Shelby is also the namesake of Kindness Delivered, an organization that delivers kindness in Jesus’ name throughout the community. For more information on Shelby and Kindness Delivered, visit kindnessdelivered.org.
Date: Friday, October 21, 2022
Time: 3:00 p.m. CT (entry in-person/zoom at 2:45p)
Location: Washington University School of Medicine (660 S Euclid Ave, St. Louis, MO 63110)
Date: October 22, 2022
Time: 8:00 a.m. – 4 p.m. Eastern Time
Location: Kennedy Krieger Institute’s Arnold J. Capute, MD, MPH Conference Center – Eighth Floor (1741 Ashland Avenue, Baltimore, MD 21205)
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.
Make sure to follow the event on Facebook to stay up to date!
Date: Saturday, October 22nd, 2022
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 and in-person this Fall! Save the date to join us on Saturday, October 22nd for our 20th annual stroll at Whittier High School.
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.
Date: Saturday, October 29, 2022
Time: 11:00 a.m. ET
Location: SC State House (1100 Gervais St, Columbia, SC 29208)
Date: Sunday, October 30th, 2022
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)
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.
Date: Saturday, November 5, 2022
Time: 9:30 a.m. ET
Location: Tradewinds Park, Grandiosa Shelter (3600 W. Sample Rd, Coconut Creek, FL 33073)
Event Chair: Henry Perez (Contact Email)
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.
Date: Saturday, November 12th, 2022
Time: 8-9 p.m. ET
Location: Virtual Livestream + In-Person Viewing Parties across the US
Join us for the 3rd Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett and Kathryn & Luke Kissam!
Grab your commemorative beer or wine glass and join us for an evening of stories from your Rett community, inspiring updates on science and research advancements, and the opportunity to support Rett families all over the world. This special event will be broadcast live from New York City and reach thousands across the globe. Over the past two years, our donors, sponsors, and viewers have raised more than $400,000 to empower families and accelerate research towards a cure.
Go ALL IN! Get your ticket to watch from your living room or learn more about a viewing party near you!
Got your tickets? Make sure to let us know you’re coming on our Facebook Event Page to get up-to-date information and connect with other attendees!
Download the event’s ONLINE JOURNAL for more information on the program, special messages, and all the nominations submitted by the community for our superheroes for Rett!
For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Jackie Ventura at [email protected].
Date: December 6, 2022
Time: 1-2 pm ET
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.
Hannah’s 11th Annual Art Show for IRSF
Date: Saturday, December 10th
Time: 2pm-4pm ET
Location: Four Corners Art Gallery
148 N Main St, Mooresville, NC 28115
Join Hannah Carpenter for her annual art show for IRSF. Hannah works tirelessly all year long with her art instructor to create beautiful pieces of art. They are transformed into calendars, notecards and print all for sale at her holiday show. Proceeds benefit IRSF. Please direct any questions to Trisha Carpenter (Hannah’s mom) at [email protected]
