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Race For Rare Kids 5K and 1K Kids Dash

Saint Joseph, Michigan

Saint Joseph, Michigan

Sat 9th September 2023

3 races

Organiser's Description

Race For Rare Kids on Lake Michigan is an inclusive 5K race for participants to run, walk, or roll also including a 1K Kids Dash. This year is our 5th Annual Race for Rare Kids! RFRK is dedicated to the advocacy, education, and support for families proud to call someone they love "rare." Our event hopes to raise awareness for any person taking on a unique journey with a disability or developmental difference while raising funding for the rare disease non-profit for children, The TBCK Foundation.
Follow us on social media: and @tbckfoundation on Instagram
Race For Rare Kids on Lake Michigan is a charity walk/run event celebrating all abilities hosted by the rare disease foundation, The TBCK Foundation. It is dedicated to the education, advocacy, and support for families proud to call someone they love "rare." It is an inclusive event that seeks to honor ALL "rare" children impacted by different diagnoses, different abilities, developmental delays, or disabilities. Race For Rare Kids's mission brings awareness to the importance of inclusion, accessibility, and empathy. This year we are proud to announce a collaborative coalition to build an inclusive park in St. Joseph. Proceeds from the race this year will help to make this dream of ours and many in the community a reality! We are so grateful for all of our local sponsors and supporters who made this event possible!
The TBCK Foundation is a rare disease non-profit founded to support research, advocate, and educate for those kids impacted by TBCK syndrome, a rare neuro-genetic disease that causes severe epilepsy, intellectual disability, and developmental differences. With just under 100 cases worldwide, TBCK Syndrome is a very rare disease. With limited active research and no resources specific to TBCK syndrome, Southwest Michigan natives, Nikki Stusick and Turner Binkley founded The TBCK Foundation in 2019 inspired by their five-year old son and TBCK warrior, Theo. Originally called, Theo's Village: The TBCK Foundation, but since simplified to The TBCK Foundation, "Theo's Village" is at the heart of our work. It's the component within our mission that harnesses the importance of the human stories behind diagnosis and represents the collective journey of all the families impacted by TBCK.
Part of our mission is accelerating research to seek a better understanding into TBCK Syndrome, which remains under-researched with limited understanding of the disease. Our other focus is supporting TBCK families and other "rare" families as they navigate through the world of different abilities and disability. There are profound challenges that all families face when navigating their child through the world of different abilities and disability. The TBCK Foundation is committed to educating and advocating for change for more inclusion, acceptance, and working to demystify disability. 
We want to keep all children and adults safe, especially considering some of our participants may be immuno-compromised. Face masks are not required outdoors, but per MDHHS and CDC recommendations,  face masks are recommended for unvaccinated individuals in crowded areas. 
Registration for the 5k is available until September 1 for $25. This includes a race bib and race t-shirt!
We may not be able to guarantee t-shirt availability after September 1!
Registration for the Kids Dash 1K is available until September 1 for $12. This includes a race bib, race, t-shirt, and special "advocate" or "VIP" gift! 
Late registration for the Kids Dash begins September 1 through Race Day for $15. We may not be able to guarantee t-shirt or gift availability after September 5!
Our goal is to celebrate diversity! We want to celebrate our rare kid VIPs!
"Rare VIPs" are someone who has a different ability, disability, or developmental difference. This might be a diagnosis of ASD, cerebral palsy, down syndrome, sensory processing disorder, or an undiagnosed disability.
Be sure to indicate if you are registering a "Rare VIP" and mention if there are any specific dietary or sensory needs that can be considered. Our event is about empowering kids with disabilities and their non-disabled peers to embrace differences and diversity!
If you have a cape from previous years, please wear it to the race! 
Early packet pick-up is Friday, September 8! Location details: Watermark Brewery in Stevensville, MI MI 4:30pm-7:00pm. Race day registration and pick-up are also available, just be sure to come early!
Refreshments will be provided in a Covid-safe set-up to ensure the safety of participants. Dietary restrictions are requested in your registration in order to accommodate those needs!
There will be one water station on the course (about half way on the course.)
Strollers and wheelchairs are allowed (and encouraged!) and the route is fully accessible. If there are specific mobility needs requested, please email: [email protected]
Parking is available at the Berrien County Court House. Follow the ramp around or there are stairs by the bridge down to the Arboretum. There is limited parking in the Arboretum parking lot, we kindly request those spaces be left for families with wheelchairs and strollers. 
We love partnering with businesses and individuals that are advocates for our kids! Become a sponsor here!
Sign-up here to join our team of amazing volunteers!
Overall Female + Male 1st, 2nd, + 3rd 
13 and Under Female + Male
14-17 Female + Male
18-34 Female + Male
35-49 Female + Male
50-64 Female + Male
65-79 Female + Male
80+ Female + Male
Follow us on Instagram and Facebook! We will post photos from the race, information about sponsors, and other important information!


  • Race for Rare Kids on Lake Michigan 5K

    Sat 9th September 2023

  • Race for Rare Kids on Lake Michigan 1K Kids Dash

    Sat 9th September 2023

  • Race for Rare Kids Supporter Participant

    Sat 9th September 2023



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Saint Joseph, Michigan

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