Deborah Hughes brings a unique combination of professional expertise, personal experience, and passionate advocacy to her role with End AxD. With more than 20 years of experience in the engineering field, Deborah transitioned her career path after her son, Daniel, was diagnosed with Alexander Disease in 2010. Determined to make a difference, she and her husband founded Daniel’s Fight, a nonprofit initiative dedicated to raising awareness and funding for Alexander Disease research. To date, Daniel’s Fight has contributed nearly $100,000 to the Waisman Center to advance critical AxD research.

Motivated by her son’s journey, Deborah pursued a Bachelor of Science in Communication Science Disorders from the University of South Florida-Manatee, with the goal of supporting children with special needs through speech pathology. Although she paused her degree to focus on Daniel’s medical needs, her passion for service led her to establish a successful pediatric outpatient clinic providing speech, occupational, and physical therapy for children.

As a business owner, advocate, and mother who has walked the most difficult road—losing Daniel in October 2024 at the age of 14—Deborah brings both personal insight and professional strength to the mission of ending Alexander Disease. She is committed to ensuring that no family endures the same heartbreak and continues to fight tirelessly to advance research, awareness, and hope for the AxD community.