Uniting Patients and Accelerating Research: A New Chapter Launches for A Cure in Sight and RCRF
A close-up shot of an eye. Credit: Canva
The Rare Cancer Research Foundation is honored to have a wide range of strong partnerships with organizations that are working to propel research and therapeutics for rare cancers forward. In this piece, we highlight A Cure in Sight, one of RCRF’s longest partnerships. For more information on A Cure in Sight, please visit https://acureinsight.org/
In 2010, ACIS President and Founder Melody Burchett was diagnosed with Ocular melanoma (OM), a rare eye cancer that develops in melanin-producing cells (melanocytes). Having previously battled kidney cancer, Melody was struck by the stark difference in the resources and support she received between the two diagnoses. This time, she was left with little to no guidance.
“I was given very bad news, told not to Google it, told to get my affairs in order, and that I had two to five years to live,” Burchett recalled. “There were no supporting documents, no resources, no counseling…nothing. It was a very lonely feeling.”
Unwilling to accept this lack of support, Melody sought out patient communities in 2011. She discovered groups on Facebook and listservs where individuals with OM connected, shared experiences, and even provided financial assistance to one another for transportation, treatment, and basic living expenses.
“It was incredibly helpful to hear what other patients were going through, to listen to their stories, and to realize I wasn’t alone,” she said. “Resources were out there, but they were driven by patients—not organizations.”
Although research into OM had advanced since the 1980s, there was still no true patient support program.
“There was nothing for OM awareness. No ribbon, no merchandise, no beacon of hope for people to hold onto,” Burchett said. “That felt far behind where treatment options were.”
Recognizing this gap, Melody founded A Cure in Sight in 2012 to bring OM patients together.
“50% of patients may experience metastasis with ocular melanoma, but 100% are affected by the diagnosis,” she explained. “The other 50%—those not facing metastasis—were being left out. I wanted to create something different.”
Since then, ACIS has grown into far more than an advocacy and support group. Today, the organization hosts educational meetings and webinars to keep patients informed of the latest research and treatments, while also funding late-stage, actionable research. Since 2018, ACIS has provided $1 million to accelerate progress toward new therapies.
In 2015–2016, Melody met the late Mark Laabs, founder of the Rare Cancer Research Foundation and a fellow OM patient. Their connection led to the creation of the ACIS–RCRF partnership.
“I once asked Mark why he hadn’t focused specifically on ocular melanoma,” Burchett recalled. “He told me, ‘Ocular melanoma is covered by ACIS. There are so many rare cancers, and we can learn from each other.’ I thought that was very novel.”
The Insight Biobank logo, powered by pattern.org
Now, in 2025, ACIS and RCRF are proud to announce a new chapter in this partnership with the launch of ACIS’s The Insight Biobank, which will collect and store biological samples from OM patients to advance research.
Samples will be gathered and stored by RCRF’s biologistics experts through its tissue and medical data collection initiative, pattern.org.
“Why reinvent the wheel? pattern.org already has the process down, so we wanted to use that system,” Burchett said. “It’s also a way to honor Mark. He worked so hard, and we saw his frustrations. We’re grateful he put his time, energy, and resources into creating RCRF. It’s a strong, established program—and it came from one of our own OM community members. We want to honor that.”
