Kristen Malfara lives in Ocala, FL, with her 26-year-old son, Morgan, who is affected by Aicardi-Goutieres Syndrome. There is currently no treatment available for Morgan’s type of leukodystrophy. Kristen continues to support Morgan with care and dedication, as she did for dozens of children affected by rare disease and disability for many years through The M.O.R.G.A.N. Project. The foundation was dissolved in 2023, but Morgan’s legacy continues through Morgan’s Legacy Gift, a program of Hunter’s Hope that is funded by an endowment from The M.O.R.G.A.N. Project.

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