The TBCK Foundation is tasked with helping to support the lives of families with children of rare developmental differences, and they’ve established a brand new 5K in St. Joseph.
The First Annual Race For Rare Kids on Lake Michigan is described as “an inclusive event that celebrates all abilities!” All ages are welcome to participate by running, walking, or rolling by stroller or wheelchair. The race will take place Saturday, September 7, 2019 at 9am at the Margaret Upton Arboretum in St. Joseph.
Race For Rare Kids on Lake Michigan is dedicated to the education, advocacy, and support of families proud to call someone they love “rare”. Our event hopes to raise awareness for any child (or adult) taking on a unique journey with a different ability, disability, or developmental difference and to raise funding for the non-profit rare disease foundation The TBCK Foundation, which benefits children born with the neuro-genetic disease TBCK Syndrome.
The event kicks-off with a 1K Kids Dash beginning at 8:30am. Following at 9am will begin the 5K that goes along Lake Michigan by Silver Beach, to Lions Park and back to Margaret Upton Arboretum. There will be prizes for top finishers and special awards for participants. With the support of local businesses and community members we are pleased to have this opportunity to show our support for these extraordinary people.
Race fees are $25 to pre-register and $30 after August 23. Registration includes a t-shirt and race bib. The 1K Kids Dash is $10 and includes a t-shirt. In person registration begins on race day at 7:30 am. You can stay up to date on the race by joining the Facebook event. Registration is online: www.tbckfoundation.com/raceforrarekids2019
Those who have questions about donations, sponsorships, or volunteer opportunities can contact Nikki Stusick at tbckfoundation@gmail.com.
The TBCK Foundation is a rare disease 501(c)3 non-profit founded to advocate, educate, and support research for those kids impacted by TBCK syndrome, a rare neuro-genetic disease that causes epilepsy, intellectual disability, and developmental differences. The TBCK Foundation works diligently to seek support for families and to support the advancement of research of TBCK syndrome. The TBCK Foundation was founded by Southwest Michigan natives, Nikki Stusick and Turner Binkley who are raising their two-year old son, Theo, born with TBCK Syndrome. The TBCK Foundation believes in advocacy that extends beyond just TBCK. 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 celebration of all abilities. For more information visit www.tbckfoundation.com.
