For twenty years, ACCRF has been a driving force in ACC research. Uniting patients and researchers around the world, ACCRF has built a global community and transformed the research landscape to bring patients to the threshold of life-changing therapies. 2025 was a banner year of scientific breakthroughs, and we are now closer than ever to effective treatments for ACC. As we enter our third decade, ACCRF is capitalizing on this momentum by redoubling our ongoing research efforts while pursuing strategic new areas for discovery and development.
Central to these efforts, Dr. Nicole (Nikki) Spardy Burr, PhD, has been named ACCRF Executive Director, overseeing all research and administrative activities. Dr. Spardy Burr joined the foundation in 2016 and has served as Director of Research for seven years, guiding scientific strategy and managing daily research operations. As the face of ACCRF’s research efforts, she has presented hard science at global research meetings and has educated patients to help them on their treatment journeys.
“The ACCRF Board of Directors is proud to unanimously appoint Dr. Spardy Burr as Executive Director. During her tenure, she has built strong relationships with both the research and patient communities and understands the areas of unmet clinical need for ACC patients. She will undoubtedly guide ACCRF into its third decade with a clear scientific vision and unfailing dedication to our community.”
– Tom DiLenge, Vice Chair, ACCRF Board of Directors
“We are fortunate and deeply appreciative that Nikki has committed herself with such devotion to ACC patients,” said outgoing Executive Director and Co-Founder Jeff Kaufman. “Quite simply, she has the scientific rigor, extensive experience, and caring nature to lead ACCRF with skill and energy.”
Jeff Kaufman remains as Chair of the ACCRF Board of Directors, managing governance and oversight of the foundation’s activities. He will shift his focus from daily operational activities toward strategic initiatives, including industry collaborations and patient education.
Speaking on this new phase of ACCRF’s research initiatives, Dr. Spardy Burr commented, “I want to thank Marnie and Jeff Kaufman for building ACCRF into the galvanizing force it is, and for partnering with me for a decade to make dramatic progress. We are reinvigorating ACCRF from an incredibly strong base, and I couldn’t be more enthusiastic about the coming opportunities to help our patients.”
ACCRF also is announcing the promotion of Reed Motz to Director of Communications and Development. He joined the foundation three years ago and manages the patient and researcher updates, website, social media, physicians list, annual report, and fundraising. “Reed has dramatically improved the quality and consistency of our patient communications, which are central to our educational mission and building strong relationships with our patient community,” said Marnie Kaufman.
“I am excited to further the remarkable work of the past 20 years as we continue to grow our global network and bring the highest quality resources and educational opportunities to patients.”
– Reed Motz, Director of Communications and Development
Marnie continues to immerse herself in patient relationships and patient meetings but will be transferring many operational activities to Reed as well as Development and Operations Coordinator Katelyn (Katie) Hache. As ACCRF Co-Founders, Marnie and Jeff still lead the Board of Directors and remain very actively engaged. “ACCRF is core to our beings, and we will continue to ensure the foundation serves the ACC community with maximum impact.”
Learn more about ACCRF’s history and get to know our new Executive Director in this Recent interview.
