(Gene Therapy)
Jordana Holovach serves as Vice President, Head of Communications and Community at Myrtelle, where she oversees all internal and external communications, brand management and community engagement and advocacy. Jordana joined the Company in 2021, bringing more than 20 years of experience in leadership roles in the non-profit/rare disease sector. Jordana most recently served as founder of Jordana Holovach Communications consulting for non-profits and patient groups by developing strategic marketing campaigns, public relations, social media programs, advocacy, and brand management.
She began her career in public relations at two of New York’s top consumer public relations firms, but then quickly pivoted when her first child, Jacob was diagnosed with Canavan disease. From 2000-2014, Jordana was Director of Jacob’s Cure, the non-profit organization she founded to fund research and raise awareness for Canavan. Jordana assembled an influential board of directors, supporters, and critical partnerships with various companies and corporations while also increasing visibility of Jacob’s Cure and Canavan disease on Capitol Hill where she garnered key legislative support and built critical relationships at the National Institute of Health (NIH) and Food and Drug Administration (FDA).
Jordana obtained her B.S. in Marketing from the Fashion Institute of Technology as well as an Associate Degree in Buying and Merchandising. She adores watching her daughters play soccer, but when they are not on the field, you can usually find her at a table playing Canasta.
Jordana understands that rare disease is only rare until it happens to you or someone you love. When her son Jacob was diagnosed with Canavan disease, she had learned of a novel gene therapy trial in New Zealand involving 2 Canavan children which exhibited modest but exciting results. After being told of the devastating symptoms Jacob would experience and his fatal diagnosis, there was hope where none existed before. She immediately went ‘all-in’ to focus on Canavan to support another gene-therapy trial for Jacob and other children. Fundraising, lobbying for federal funding and awareness campaigns led to FDA approvals and Jacob’s enrollment in the first US gene-therapy trial for a brain-based disorder in 1998 and a subsequent trial in 2000.
Her deep, personal understanding of the rare disease space drives her work and passion at Myrtelle, connecting patients with treatment possibilities and providing hope.
(Gene Therapy)
(Canavan Disease)