As a committee of the Board of Directors, the Fundraising Committee helps ensure fiscal health through philanthropy, fund development, and active recruitment, encouragement and support of grassroots fundraising efforts. Committee members include both Board and non-Board members; all committee work is done in partnership with and through the leadership and enabling of assigned staff.
Florence Mannes
Florence lives in France, just outside of Paris, with her husband, Philippe and their 3 sons, Romain, Victor and Raphaël. Raphaël, the younger one, born in 2008, is affected with Barth syndrome.
After graduating from a French business school, Florence worked for 13 years as a lawyer for a European bank. She then decided to retrain and, in 2020, completed a master’s degree in speech therapy, specialized in eating disorders.
Another important part of her life is Syndrome de Barth France, the French affiliate of BSF, that she created in 2010 with her husband, to raise funds and awareness of Barth syndrome in their country. Florence and Philippe have attracted a large and energetic team of triathletes in France to form Barth France which has been very successful in spreading the word about our rare disease and gaining financial support for Barth research around the world through participation in triathlons and other extreme races.
