Posted on November 26, 2020 by jmarsz
As the Thanksgiving holiday is ought to do, we find ourselves contemplating what we give thanks for this year. I am only in my second year at the helm of this foundation, and I find myself thankful for a lot this year.
I am thankful for a foundational past. For 27 years, the AHC Foundation has led the charge against AHC. In those first years, the guerrilla tactics of hijacking doctors from their conferences to discuss this ultra-rare disease, resulted in a momentum of curiosity, then a mission. For 27 years those initial few families grouped with more families, raised funds, connected AHC families (without social media,) created a non-profit, split up, re-joined, found the gene that causes AHC, created support groups for families, split-up, developed an alliance of international groups, and funded nearly $3 million in research into AHC. I am thankful for the brazen courage of those early militant parents; without whom we would not be looking into such a bright future today.
I am thankful for a promising future. From such a strong foundation, our organization can continue to support families through education and research. Our collaborations with Cure AHC and Hope for Annabelle are encouraging our community to come together once again. Together, we are at the brink of what is possible in bioscience. Gene therapy projects, advancing research into the mechanisms of AHC, and preparing for clinical trials by creating a natural history database (with great longitudinal data gathered over two decades) are only three ways our foundation is building the future through research. Education buttresses our future through Family Meeting 2021, a remodeled website (coming early 2021), and our collaborative webinar series. Family support continues to crown our future through crisis management, initial AHC contact, family grants, AHC support groups, and a general availability to AHC families and their needs. These three pillars guide our volunteers to steward gifts of time and treasure with great care and great hope.
I am thankful this year. Especially this year, I am grateful for this touchstone called the AHC Foundation.
Through research, education, and family support, we have
ONE MISSION: END AHC
– Joshua Marszalek
AHC Parent and President AHC Foundation
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