Jessica Abo sits down with the co-founder of Bisous for Léo.
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When Emily Rogath Steckler learned her best friend’s son was diagnosed with Infantile Neuroaxonal Dystrophy (INAD), she knew she had to do something; so, she and Léo’s mom, Deborah Vauclare, started, Bisous for Léo. The organization is “an ancillary arm of the INAD Cure Foundation, which is the only United States-based nonprofit working on treatment and cure options for INAD, which in layman’s terms is a cross between Alzheimer’s and Parkinson’s for kids,” she says. “We’re trying to kiss this disease goodbye so that way nobody else is affected; and also, to raise awareness for those who already are affected and who are suffering.”
Rogath Steckler sat down with Jessica Abo to explain what people can do to support INAD research, how pregnant women can get tested for the disease and ways to break through the noise if you’re trying to raise awareness and funding for a cause. For more information or to donate, visit bisousforleo.org.