This week's episode is with Michele Levoir Sloan, co-founder of the Foundation To Fight H-ABC. Michele and her husband started the foundation in 2015 after their daughter was diagnosed with H-ABC. Since then, they have supported families affected by this condition worldwide, collaborated with numerous nonprofits, and worked alongside biotechnology companies to support research for a cure.
In this episode, Michele and I discuss her inspiration for creating the Foundation to Fight H-ABC, its mission, and its initiatives/fundraisers. We then dive into current research focused on finding a cure for H-ABC and the ASO treatment in clinical trials. We later focus on the necessity of raising awareness for rare conditions, especially H-ABC, as there are only about 200 diagnosed cases, making this condition mainly unknown to the public. She then shares her goals for the future and an inspiring message to families affected by H-ABC.
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