Events

Oct
30
Sun
Dallas Strollathon
Oct 30 @ 1:00 pm – 4:00 pm

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)

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.

Nov
5
Sat
Florida Strollathon
Nov 5 @ 9:30 am

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)

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.

Nov
12
Sat
3rd Annual Raise a Glass for Rett Gala
Nov 12 @ 8:00 pm – 9:00 pm

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!

GET VIRTUAL TICKETS

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].

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.

Dec
10
Sat
Hannah’s 11th Annual Art Show for IRSF
Dec 10 @ 2:00 pm

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]

Jan
28
Sat
Siera’s 35th Birthday Bash for IRSF
Jan 28 @ 5:00 pm

Siera’s 35th Birthday Bash for IRSF

Date: Saturday, January 28th, 2023
Time: 5pm-11pm
Location: St. Louis Moose Lodge 1566, 811 Michigan Ave, St Louis MI 48880

Come help us celebrate Siera’s 35th birthday while raising funds for IRSF. Enjoy an evening of entertainment, dinner & cash bar, live & silent auction and more! All ages welcome.

To RSVP, please contact Lisa Rushin at: 989-285-5994.

Unable to join but want to donate- you may do so here: https://rettgrassrootevents.funraise.org/fundraiser/lisa-rushin

All proceeds to benefit IRSF.

Feb
25
Sat
1st Annual Roses for Rett
Feb 25 @ 6:30 pm

Join us for the 1st Annual Roses for Rett in honor of Sabra Hampton!

Date: Saturday, February 25th
Time: 6:30pm to 10:30pm PT
Location: The Mill Casino
3201 Tremont Ave
North Bend, OR 97459

Join us for Roses for Rett, a night of dancing and music with light appetizers, hosted wine and cash bar as well as a silent auction. All proceeds to benefit IRSF.

Please direct any questions to Rachel Hampton at [email protected]

Website: https://give.rettsyndrome.org/rosesforrett2023

Apr
22
Sat
Run for Rett 2023
Apr 22 @ 7:00 am

Date: Saturday, April 22, 2023
Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run
Location: Busse Woods – North, Grove #4, Elk Grove, IL (Enter Busse Woods off of Higgins Road – 1.1 miles east of Route 53)

From the serious runner to the recreational runner to family members and friends of all ages, the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run.

*First 200 participants receive an official Run For Rett t-shirt*

INFORMATION & REGISTRATION

Apr
24
Mon
Hannah’s Hope Golf Tournament
Apr 24 @ 7:00 am

**RESCHEDULED**

Date: Monday, April 24, 2023
Time: Registration 7:00 am ET; First flight tee off 8:30 am ET
Location: Hillcrest Golf & Country Club (4011 N Boston Ave, Lubbock, TX 79415)
Continental breakfast items available and lunch will be provided

We invite you to take part in the First Annual Hannah’s Hope Golf Tournament rescheduled for April 24, 2023 at Hillcrest Country Club. This tournament will benefit the International Rett Syndrome Foundation in honor of Hannah Hooks.

The inspiration behind our tournament is 10-year-old Hannah Hooks. Hannah lives in Lubbock and is in 5th grade at Lubbock-Cooper West Elementary. Hannah was born with a rare disease called Rett Syndrome. Rett syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of the child’s life. In April of 2022 IRSF hosted their National Science and Family Summit and presented an update on a treatment for Rett Syndrome. Rett Syndrome has been treated in mice and there are multiple clinical trials going on throughout the world to bring a cure to the males and females living with Rett. A treatment for Rett will also lead to breakthroughs in many other diseases and disorders. In order to continue research, organizations like International Rett Syndrome Foundation need funds to contribute to the many companies who are seeking a treatment.

INFORMATION & REGISTRATION

Apr
29
Sat
Cammy Can’s 11th Annual Cinderella Story
Apr 29 @ 5:00 pm – 10:00 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