Coleman became involved with NDF after a close friend was diagnosed with GNE myopathy. Based in Connecticut, he works in investment management, drawing on prior experience as a healthcare investor at Loeb King Capital Management and as an attorney at Fried, Frank, Harris, Shriver & Jacobson.

Coleman holds a bachelor’s degree from Brown University, a master’s degree in Integrative Biology from UC Berkeley, and a J.D. from Fordham School of Law.

David is an entrepreneur and finance professional with experience building and scaling companies. He has raised more than $300 million in venture funding across multiple ventures.

He co-founded Standard Bots, an AI and robotics company, and Miralinc Pharma, which is advancing HDAC6 inhibitors for neuromuscular diseases. He also co-founded Bowery Farming and Leappay, which was acquired by Funding Circle.

Earlier in his career, David worked in hedge funds and private equity.

Tara grew up in a family deeply affected by GNE myopathy, witnessing five of her seven siblings develop the condition. Her own journey to an accurate diagnosis spanned four decades, ending in 2010.

She trained as a teacher, earned a degree in clinical dietetics, and raised two children while navigating the progression of GNE myopathy. Her career included education and directing the dietary department of a skilled nursing facility.

Today, she brings her language skills, professional background, and lived experience to patient advocacy and building a global patient community.

Dr. Mozaffar is a professor of Neurology, Orthopaedic Surgery, and Pathology at the University of California, Irvine. His work includes leadership of the UC Irvine-MDA ALS and Neuromuscular Center and the university’s Neuromuscular Program.

He has chaired the Neuromuscular Section of the American Academy of Neurology and the Medical Advisory Board of the Myositis Association. His experience also spans research oversight, clinical trials, and translational science.

Dr. Bhana is a board-certified rheumatologist with experience in clinical practice, pharmaceutical medical affairs, and collaborative research. His work spans autoimmune and neuromuscular conditions, research strategy, and patient-centered innovation.

He has served in leadership roles within the American College of Rheumatology, supporting education, digital communication, and community engagement.

Diagnosed with GNE myopathy in 2023 after five years of progressive symptoms, he is committed to improving patients’ quality of life and advancing effective treatments and a cure.

Navid moved from Iran to New York as a teenager and earned a degree in Computer Science from Queens College. He built a computer consulting and services business supporting local small businesses.

Caring for his mother, who lived with multiple sclerosis, and his father following a stroke gave him firsthand experience navigating medical, social, and government support.

With several cousins living with GNE myopathy, Navid brings a personal commitment and strong community relationships to NDF’s fundraising and patient support efforts.

Charlie is a product and marketing leader with nearly a decade of experience building consumer products used by millions of people. His career spans product management, marketing, and digital strategy at global technology and financial services companies.

He is also an entrepreneur and restaurateur based in Chicago.

With two immediate family members affected by GNE myopathy, Charlie’s commitment to NDF is deeply personal. He supports advancing research, raising awareness, and finding effective treatments and a cure.

Dr. Weisleder is Professor and Chair of Molecular and Cellular Biochemistry at the University of Kentucky College of Medicine, where he holds the Ruth Louise Works Professorship in Neuromuscular Diseases.

His research focuses on muscle physiology, membrane repair, and cellular calcium regulation, with support from the NIH and Muscular Dystrophy Association.

He co-founded TRIM-edicine, a biotechnology company developing regenerative therapies based on his patented discoveries.

Dr. Angela Lek is Vice President of Research at the Muscular Dystrophy Association. Her work focuses on understanding neuromuscular diseases and accelerating the translation of gene therapies for ultra-rare conditions.

She completed her Ph.D. at the University of Sydney studying limb-girdle muscular dystrophy, followed by postdoctoral training at Boston Children’s Hospital and Harvard Medical School studying facioscapulohumeral muscular dystrophy.

As a care partner for her husband, she also brings a personal commitment to patient advocacy and accessible scientific communication.

Dr. Lek trained in computer engineering, physiology, and bioinformatics before completing his Ph.D. at the University of Sydney. His postdoctoral research took place at Massachusetts General Hospital, Harvard Medical School, and the Broad Institute.

His work has included large international studies using genome and exome analysis to identify the causes of rare muscle diseases. He leads a research group in the Department of Genetics at Yale School of Medicine.

Living with limb-girdle muscular dystrophy himself, Monkol brings both scientific expertise and a patient’s perspective to rare disease research.