ACC survivors launch national push to fund rare cancer research

Two adrenocortical carcinoma survivors have formed the Adrenal Cure Collective to speed research, support families, and connect patients with leading experts on one of the world’s rarest cancers. The group will host the Zebra Run 5K on July 25 in New Boston, Michigan, with proceeds going directly to ACC research.

Why it matters: - Adrenocortical carcinoma affects about one in one million people. - The disease is among the rarest and most aggressive cancers. - Patients often face limited treatment options and few peers who understand the diagnosis. - The Adrenal Cure Collective is directing 100% of Zebra Run 5K funds and other fundraising event proceeds to ACC research.

What happened: - ACC survivors Hope Law and Melinda Nelson founded the Adrenal Cure Collective, a national 501(c)(3) nonprofit focused exclusively on adrenocortical carcinoma. - The organization will host the Zebra Run 5K on July 25 at Willow Metropark in New Boston, Michigan. - The event is designed as both a community race and a national gathering for patients, caregivers, advocates, researchers, and physicians. - Participants can join in person in Michigan or virtually from anywhere in the world.

The details: - The Adrenal Cure Collective says its mission includes funding ACC research, supporting patients and families, raising awareness, and connecting leading physicians and researchers with the community. - Distinguished guests at the race include Dr. Jaydira Del Rivero of the National Cancer Institute, part of the National Institutes of Health, and Dr. Gary Hammer of the University of Michigan Rogel Cancer Center. - Hope Law said the group was created because patients cannot afford to wait for research progress. - Melinda Nelson said the organization is building a community where patients, families, physicians, and researchers work together. - The organization says every dollar raised is meant to help scientists develop better treatments and, ultimately, a cure. - Registration, sponsorship opportunities, and more information are available through the organization’s announcement.

Between the lines: - The nonprofit is trying to turn a rare-disease diagnosis into a broader advocacy network. - The mix of patient leadership and top medical researchers signals an effort to bridge fundraising, community support, and clinical science. - The emphasis on national and virtual participation suggests the group is trying to reach beyond Michigan and build a wider ACC community.

What's next: - The Zebra Run 5K will serve as the group’s next major fundraising and awareness event. - The Adrenal Cure Collective plans to keep using community-driven fundraising to support ACC research and patient support. - Continued collaboration with researchers and physicians will be central to the organization’s approach.