Brittany Stineman

Brittany Stineman is a fierce advocate for rare disease research, and a powerhouse in fundraising bringing years of expertise, passion, and visionary leadership to her role as Chief Advancement Officer at Cure Rare Disease. Known for her strategic acumen and relentless drive, Brittany has spearheaded transformative initiatives in rare disease advocacy, securing millions in funding, building high-profile partnerships, and engaging global media to rally support and awareness.

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Prior to joining Cure Rare Disease, Brittany founded and led smashSMARD, a nonprofit dedicated to advancing research for Spinal Muscular Atrophy with Respiratory Distress (SMARD), a rare and devastating neuromuscular disease. After her son Nash was diagnosed, Brittany turned her pain into her purpose and her mission was clear. In this role, she catalyzed a revolutionary gene therapy project from concept to clinical trial, managing everything from high-stakes fundraising to navigating complex regulatory processes with the FDA. Her tenacity and strategic approach to advocacy led to a historic FDA approval reversal, securing emergency access for patients and pushing boundaries in ultra-rare disease research. To date, 7 patients have been treated with this gene therapy that is still in clinical trial.

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Throughout her career, Brittany has cultivated key relationships with major pharmaceutical companies, academic institutions, and biotech firms to advance groundbreaking therapies. Her ability to mobilize donors, execute large-scale fundraising events, and engage with the media has earned her accolades, including being named one of Chicago's “Top 6 Most Influential Women You Need to Know” by Chicago Parent and a nomination for Global Genes’ “Rare Champions of Hope” award.

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As Chief Advancement Officer, Brittany will leverage her unparalleled fundraising skills and deep commitment to rare disease patients to drive Cure Rare Disease’s mission forward. Her work will continue to focus on expanding Cure Rare Disease’s reach, securing funding for critical research, and building a robust network of supporters, ensuring life-saving advancements for rare disease patients around the world.