ACC survivors launch national push for rare cancer research

Two adrenocortical carcinoma survivors have founded the Adrenal Cure Collective to fund research, support families, and connect patients with leading experts. The group will host a July 25 Zebra Run 5K in New Boston, Michigan, as it works to build national momentum around one of the world’s rarest cancers.

Why it matters: - Adrenocortical carcinoma, or ACC, affects about one in one million people and is among the rarest and most aggressive cancers. - Patients with ACC often face limited treatment options and few chances to connect with others who understand the disease. - The Adrenal Cure Collective is directing all fundraising to ACC research, which could help speed better treatments and, ultimately, a cure.

What happened: - Hope Law and Melinda Nelson, both ACC survivors, founded the Adrenal Cure Collective, a national nonprofit focused exclusively on ACC research and patient support. - The organization will host the Zebra Run 5K on July 25 at Willow Metropark in New Boston, Michigan. - The event is designed as a national gathering for patients, caregivers, advocates, researchers and physicians. - Participants can join in person in Michigan or virtually from anywhere in the world. - For race registration, sponsorship opportunities or more information, visit the Adrenal Cure Collective’s website.

The details: - The Adrenal Cure Collective says 100% of funds raised through the Zebra Run 5K and its other fundraising events go directly to ACC research. - The nonprofit also aims to support patients and families, raise awareness and connect leading physicians and researchers with the community. - Distinguished guests at the run 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. - Dr. Del Rivero is an internationally recognized physician-scientist and ACC researcher. - Dr. Hammer is a world-renowned physician-scientist and ACC researcher.

Between the lines: - Law said patients cannot afford to wait for research progress, framing the group as a response to the urgency of a rare disease. - Nelson said the nonprofit is trying to build a community where patients, families, physicians and researchers work together. - The event and the guest list suggest the organization is trying to turn a local fundraiser into a broader scientific and patient advocacy network. - The group is also pushing back against uncertainty around medical research by leaning on community-driven fundraising and collaboration.

What's next: - The Zebra Run 5K will serve as one of the Adrenal Cure Collective’s next major fundraisers and visibility events. - The nonprofit plans to keep raising money for ACC research and building partnerships across the patient and scientific communities. - Continued collaboration with researchers and clinicians will likely shape the organization’s next steps as it seeks better treatments for ACC.

The bottom line: - Two survivors of a devastating rare cancer are using a national nonprofit and a community race to turn personal experience into research dollars, patient support and scientific collaboration.