Hairy Cell Leukemia Foundation Celebrates 40th Anniversary
Nonprofit that helped transform a once-terminal diagnosis into a treatable condition looks ahead at future efforts to deliver new treatment options and worldwide patient access
NEW YORK, Sept. 09, 2025 (GLOBE NEWSWIRE) -- The Hairy Cell Leukemia Foundation (HCLF), the only nonprofit organization in the United States dedicated to Hairy Cell Leukemia (HCL), is celebrating 40 years of progress in supporting the development and adoption of effective HCL treatments. In that time, the HCLF has helped to drastically improve quality of life by uniting patients, clinicians, and researchers around a single mission.
A group of patients in Illinois founded the HCLF, which became a nonprofit charitable organization in 1985. Refusing to accept the limited treatment options available at the time, this small group of volunteers played an essential role in bringing breakthrough treatments, such as interferon and purine analogs, to the forefront. Thanks in large part to the HCLF’s patient education efforts and work bringing together hematologists to advance research, some of those therapies are still used today and continue to save lives.
Twenty years later, a second group of patients in New York came together to support and drive deeper research in HCL. The New York group joined forces with the original group in Illinois, bringing together the core competencies of each under one HCLF umbrella. Funding raised by the HCLF has resulted in vital breakthroughs that inform the modern understanding of HCL, namely the seminal discovery of the BRAF V600E mutation in nearly all cases of classic HCL.
"What the HCLF has accomplished in four decades, largely on the backs of patient volunteers, is remarkable,” said Dr. Michael R. Grever, Professor Emeritus at The Ohio State University, Division of Hematology. “The ability to focus the efforts of multiple cancer centers, supporting patient education and funding research that has directly contributed to major scientific breakthroughs and improved the lives of these patients, is an immense accomplishment. This model should be replicated among other rare disease groups.”
Forty years in, the HCLF continues accelerating science, connecting the community, and leading the way toward a future where first-line, non-chemotherapy treatments can become the norm. The foundation is concluding a five-year, up to $10 million research initiative with Blood Cancer United (formerly LLS) to support the study of innovative treatments and novel management strategies in HCL.
“A group of patients founded the HCLF, and patients have remained at the center of the organization’s work throughout its 40 years,” said Keith Markbreiter, President of the HCLF board. “The scientific advancements supported by HCLF, and the resources made available to allow patients to connect with their peers, have been invaluable in changing the lives of countless HCL patients around the world.”
The HCLF just launched HCL2030, a second major collaboration with Blood Cancer United, to invest $5-7 million in new research over the next five years to strengthen the molecular basis of HCL, develop better therapies, and optimize patient outcomes. HCL2030 is the HCLF’s boldest chapter yet—a true global effort to extend beyond long-term remission gains towards a permanent cure.
“Our 40th anniversary provides us an occasion to reflect on all that the HCLF, led largely by patient volunteers and their families, has accomplished,” said Anna Lambertson, Executive Director of the HCLF. “While we’ve made tremendous strides in creating effective treatments and improving the quality of life for HCL patients, there’s more work to do, and we look forward to continuing efforts to enable a full life beyond cancer for HCL patients.”
To learn more about the Hairy Cell Leukemia Foundation, visit us at https://www.hairycellleukemia.org/.
About Hairy Cell Leukemia Foundation:
The Hairy Cell Leukemia Foundation (HCLF) is the only nonprofit organization in the United States dedicated to Hairy Cell Leukemia (HCL), with an impressive global footprint. Founded by HCL patients, the HCLF seeks to improve patient outcomes by funding research and providing patients access to educational resources and peer-to-peer support.
Learn more at https://www.hairycellleukemia.org/
Media Contact
V2 Communications for Hairy Cell Leukemia Foundation
hclf@v2comms.com
Legal Disclaimer:
EIN Presswire provides this news content "as is" without warranty of any kind. We do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author above.
