Lighting the Way to a Cure

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FSHD Society Radio with advocate Justin VanLanduit

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Feb 5 @ 8:00 pm - 9:00 pm

FSHD Radio Live on Facebook
Justin and his family at the Magic Kingdom.
Justin and his family at the Magic Kingdom.

9-10 pm ET | 8-9 pm CT | 7-8 pm MT| 6-7 pm ET

Join host Tim Hollenback on Facebook Live for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33.  “It was a blow to be told I have a degenerative neuromuscular disease that has no cure,” Justin recalls. “I’ve always been very active with sports, but worse than the realization that some of the things I enjoy could be taken away was thinking about how my diagnosis could greatly affect my family.” A few years after his diagnosis, Justin’s family participated in its first MDA Muscle Walk. He called the experience an “eye opener” and since then has participated in the MDA walk each year, along with the inaugural FSHD Walk & Roll in Chicago.

In 2018, Justin had back surgery to repair some herniated discs which he felt was a result of FSHD. “While laid up, I started researching how to start a nonprofit. I eventually created The TurfTank Foundation and received 501(c)(3) status. This was prior to the chapter development from the FSHD Society and my goal was to look at doing something that could be directly for FSHD.” Justin hopes to organize a golf tournament for this summer to help raise funds that can then be distributed to the FSHD Society and the MDA.