Greetings from the Hairy Cell Leukemia Foundation!

Thanks to your support, 2017 was another year of great progress for the Hairy Cell Leukemia Foundation. We strengthened our portfolio of promising research, launched our inaugural fellowship program, and provided critically important support services for patients and their families.

We hope you enjoy our 2017 Annual Report.
 
Thank you for being part of our community and for your dedication to our mission.
 
Sincerely,
 
Brian P. Friedman
President
Our Mission
The Hairy Cell Leukemia Foundation seeks to improve outcomes for patients through research in hairy cell leukemia, by advancing knowledge about HCL among oncologists and hematologists, and by providing educational resources and comfort to patients and families affected by the disease.
Our Impact
In the last year, we committed more than $600,000 to promising initiatives to advance knowledge about HCL and move us closer to a cure. We leveraged a network of 26 Centers of Excellence across 13 countries to share evidence-based information with patients, and help them navigate their diagnosis and treatment. We directly helped over 260 people affected by hairy cell leukemia.
Building Awareness, Providing Hope
We understand that a diagnosis of HCL brings a rollercoaster of emotions – fear, frustration and uncertainty. We want all patients and family members affected by HCL to have the information they need to gain comfort and be supported through treatment and beyond. We stand ready to listen and share the most current information about HCL, refer patients to HCL doctors with decades of experience in the field, and provide other resources to help patients overcome this disease and live a long, happy life.
 
Through our Ask an Expert program, we receive phone calls and emails each week from patients around the world. Their stories and needs differ – some have recently been diagnosed or have relapsed, others are in remission. We leverage the knowledge and experience of our community and international network of experts to support these patients in their journey and empower them to make informed decisions with their doctors.
 
In 2017, our Ask an Expert program directly supported 135 patients from 7 countries and 5 continents.
Since 2013, our Annual HCL Conference & Patient Seminar has brought together patients from around the world to learn from leading researchers and doctors, and to connect patients and their families with other people affected by HCL. In 2017, our free, day-long Patient Seminar at The Ohio State University drew 126 patients and relatives from 19 states, 5 countries, and 3 continents.

Here is what a few patients said about the meeting:
“These annual patient seminars are very helpful and greatly appreciated.”
“The seminar was very informative. What I learned will affect my treatment.”
Visit our website for recordings and handouts from past Patient Seminars. The next Patient Seminar will be held on October 20, 2018 in New York, NY.
Funding and Sustaining Promising Research
We fund the most promising research and invest in early career researchers to encourage professional development and expand scientific and medical advancements in HCL.
 
In 2017, we doubled our investment in HCL research, sustaining our annual research grant awards, launching our inaugural fellowship program, and initiating a new multi-year research project in collaboration with two other leading foundations.
 
Since 2016, we have partnered with the SASS Foundation for Medical Research to jointly fund up to $2 million in research grants and fellowship awards through 2021. In 2017, we awarded nearly $250,000 to exceptional researchers and launched the first cohort of HCL fellows through more than $150,000 in early career research support. These grant and fellowship awards supported promising research projects across four countries.
2017
Research Grantees
2017 Fellows
This past year, we began a partnership with The SASS Foundation and the Leukemia & Lymphoma Society to jointly support $1.2 million in new translational research over a 3-year period. Through this partnership, we will fund research in chemotherapy-free treatment strategies with the potential to greatly improve HCL therapy.
 
We also continued the implementation and expansion of the HCL Patient Data Registry with almost $200,000 in investment. A critically important tool to advance research and improve treatment in this rare disease, the Registry will help researchers around the world identify new trends in HCL outcomes and design clinical trials to advance new therapies.
Through our 4 th Annual Conference & Patient Seminar at The Ohio State University in October 2017, we convened 50 leading HCL researchers and doctors from 12 countries and 4 continents. This annual meeting helps to create synergy and eliminate silos in knowledge, research and treatment of the disease among professionals in the field.
Your support is critical to the success of our work. Please consider a donation so that we can continue to advance HCL research and understanding, and provide information and support services to patients and families.
Do you have questions or want to receive more information about our work? Contact Anna Lambertson, HCLF Executive Director, at anna@hairycellleukemia.org or 224.355.7201.