Celebrating Progress: Yesterday, Today and Tomorrow

We’ve come a long way since hairy cell leukemia was first identified in 1958. At that time, there was no effective treatment. Clinical trials finally emerged in the 1980s which led to targeted therapy and transformed HCL into a highly manageable, albeit chronic disease. A diagnosis of HCL was now treatable. Progress has been made and lives have been saved because of the patients, doctors and researchers whose desire to improve patient outcomes changed the course of this disease.

Over the next 12 months, we want to shine a light on these people and institutions and share their stories. We’re launching a year-long campaign to highlight our progress and raise awareness of the need for long-term, dedicated funding and support.

Since HCL was discovered, we’ve continued to move the needle in HCL research. 10 years ago, a grant from the Hairy Cell Leukemia Foundation supported the discovery of the BRAF mutation in classic HCL. This discovery charted a new path forward for many patients. It improved diagnosis and opened the door for new and exciting additional therapies to be used in managing HCL.

Since 2016, the Foundation has supported $2 million in additional HCL research. These patient-funded grants have allowed dedicated investigators to study treatment pathways and test in HCL therapies that have been successful in other cancers.

Last year, we launched HCL2025 to fund up to $10 million in game-changing research over the next five years. This initiative will further advance research and discovery in HCL and get us closer to a cure.

When COVID infections surged around the world, the Hairy Cell Leukemia Foundation quickly pivoted to virtual programs. We launched virtual coffee chats for patients to ease the isolation imposed by the pandemic. As the crisis continued in 2021, we innovated further, launching a webinar series to keep families informed about groundbreaking new research in HCL. Despite the ongoing pandemic, we successfully engaged hundreds of new patients.

While we remain cautious of the risks of COVID, we’re slowly resuming in-person meetings for families – on a small scale and with a focus on local connections for patients. By the end of July 2022, we will have hosted three regional patient forums, two of them hybrid to further promote regional support networks for patients and their families.

Our comprehensive approach to advocacy in this rare disease embraces the current needs of patients, while we keep our eyes on the horizon. We connect patients with the most up-to-date information in HCL so they can receive the best therapy available today. But we aren’t willing to accept the status quo.

“HCL is a rare disease, especially for women. When I was first diagnosed, I felt alone. But after attending a meeting for patients organized by the HCLF, I met others who understood my journey. Through the HCL Centers of Excellence and the HCLF’s network of support, patients like me can get current information and decide on the best course today. And through the research we fund, we can help patients in the future. I no longer feel alone.”

Adi, HCL Survivor and HCLF Board Member

We’re proud of the progress made in HCL since the 1950’s. But we know there is more to be known about HCL and we need to maximize available resources to sustain the research necessary to cure this disease.

We hope you’ll join us in this year-long campaign. Please share your story about how the Foundation has helped you and your family. Perhaps tell us about your experience in a clinical study and why you decided to join to help develop new treatment options in HCL.

“I’m involved with the HCLF to make significant strides towards a cure and improve support for patients.”

Keith, HCL Survivor and HCLF Board Member

Click here to easily share your story with us!

We hope that you will add your voice to this campaign and tell us what research, discovery and patient support in HCL mean to you. Your story will amplify our campaign and raise awareness of the resources needed to meet our shared goals and further our mission.

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Campaign Committee Members

Marc Stadtmauer - New Rochelle, NY

Keith Markbreiter - Hayward, CA

Adi Weber - Great Neck, NY

Sarah Naperala - Traverse City, MI

Bobby Patrick - Alexandria, VA

Louis Ronsivalli - Salem, NH

Anna Lambertson - New York, NY