About Us

Who We Are

Simply put, The Meredith A. Cowden Foundation exists to raise awareness of GVHD and bring everyone—patients, health care professionals, caregivers, and advocates—together in one place to support one another through our shared knowledge and experiences.

Our History

Gerald Cowden created the Foundation in 2007, six years after his daughter, Meredith, received a bone marrow transplant for Acute Myeloid Leukemia (AML) and subsequently developed Graft vs. Host Disease (GVHD). At the time, the Cowden family couldn’t find the kind of information and support Meredith needed to successfully navigate the disease—so they decided to become that resource for others.

“I had a pretty rare manifestation of GVHD back then called myositis,” recalled Meredith, who now serves as the Foundation’s executive director. “It was in my muscles, and the doctors had a really hard time figuring it out. It got really, really bad. It was very difficult to know how to handle it, what to try, and even how to understand what was happening. Once it was identified as GVHD, my parents decided they wanted to create the Foundation to keep other people from having to go through something similar.”

With the support of healthcare providers, researchers, fellow survivors, and other like-minded organizations, the Foundation took flight. And while many things have changed since those early days, one thing remains the same: we’re still a place where the GVHD community can come together to find the resources—the information, shared connection, collaboration, and support—needed to live successfully with the disease.

Portrait of an older man with white hair and beard wearing glasses, a gray suit, and a blue lanyard, smiling slightly.

We Believe

  • That we can all learn more from each other collectively than we ever could alone.
  • That the doctor/patient relationship should be one of collaboration and shared decision-making; patients learn from their doctors, and doctors from their patients.
  • That the more awareness we raise for the disease, the faster we’ll reach a cure.
  • That there’s power in information—and it should be freely shared.

Through the resources we provide, we:

  • Help people recognize and work with their healthcare team to successfully identify and manage symptoms of GVHD following a bone marrow transplant, empowering survivors to live well with the disease, both physically and mentally.
  • Build a network of support within the global GVHD community among patients, caregivers, practitioners, researchers, and advocates.
  • Foster mutually-beneficial connections and communication between people living with GVHD and clinicians, working together to construct effective healthcare models through our National GVHD Symposium.
  • Collaborate in research opportunities that improve outcomes and will one day, we hope, cure GVHD.

Our Mission & Commitments

The mission of the Meredith A. Cowden Foundation is to increase the number of blood and marrow transplant survivors, to raise awareness of transplant complications and late effects, and to reduce their impact.

The Meredith A. Cowden Foundation is committed to:

  1. Providing funding for research to prevent, treat, and cure Graft vs. Host Disease (GVHD).
  2. Educating physicians, researchers, patients, and the general public concerning GVHD and late effects of transplants, their prevention, treatment, and cure.
  3. Providing general information concerning the blood cancers and their treatment, with a special emphasis on the treatment of leukemia with bone marrow and stem cell transplantation.
  4. Providing resources to support programs designed to enhance the quality of life of patients and their families during treatment.

What Is Graft vs. Host Disease

Graft vs. Host Disease (GVHD) is a common complication after a stem cell or bone marrow transplant from another person. Immune cells (white blood cells) in the donated marrow or stem cells (the graft) recognize the recipient (the host) as “foreign.” The transplanted immune cells then attack the host’s cells. GVHD presents itself in many ways — some acute, some chronic, sadly sometimes fatally. An estimated 50 percent of all leukemia and other blood cancer patients contract GVHD following their transplant. A prominent physician once stated that with a Bone Marrow Transplant a patient trades one disease that will kill you (leukemia) for another disease that might kill you (GVHD).

Why We Are Important

Every year approximately 50,000 patients undergo a bone marrow or stem cell transplant. Approximately 50% survive. Of those survivors, approximately 50 % are diagnosed with Graft vs. Host Disease (There are currently 100,000 survivors in the U.S.)

There is not yet a cure for GVHD. Treatment for the disease involves a series of immunosuppressant drugs, which in and of themselves have significant side effects and can do long-term damage to the patient’s body. For example, a very common side effect is cataracts, regardless of a patient’s age. By raising funding and awareness around GVHD research, we’re championing new treatments to help improve the lives of the thousands of people living with this debilitating disease.

The Meredith A. Cowden Foundation is also a founding member of the GVHD Alliance, a collaboration of six organizations with the aim of (1) supporting those affected by GVHD and (2) understanding and address ing unmet needs, as well as (3) providing helpful resources to create change.

The Cowden Foundation received the 2021 ASTCT Public Service Award as well as the Leukemia and Lymphoma Society Lifeblood Award in 2019. Members of the Cowden Foundation participate in patient advocacy panels for pharmaceutical companies and organizational steering committees focused on research and treatment of the disease.

What We Do

The GVHD National Symposium

Every year since 2010, the Meredith A. Cowden Foundation has sponsored the GVHD National Symposium. The Symposium Planning Committee consists of physicians from the Cleveland Clinic Taussig Cancer Institute, Johns Hopkins Medical Center, Moffitt Cancer Center, University of Pittsburgh Medical Center, The Ohio State University, and the National Institutes of Health. As a committee, they recruit research doctors to present information and findings about the latest research and procedures to treat chronic GVHD. In addition, we invite speakers to make presentations to patients, their caregivers, and families. These presentations provide advice and help in coping with the trials and tribulations of living with GVHD.

GVHD Patient Advocacy

The Meredith A. Cowden Foundation contributes to the development of effective treatments and approaches to working with those in the GvHD community through public speaking, presentations at conferences, collaborating with like-minded organizations, and judging awards for development of noveltherapeutics for patients. Meredith Cowden led the 2020 NIH Consensus Consortium Patient Advocacy Summit, which identified the unmet needs and barriers to, as well as potential paths to, improved quality of life for those living with GVHD. She has also spoken in various formats regarding patient advocacy, education, and empowerment.

The GVHD Patient Advocacy Symposium

Held for the first timein 2023, a separate Symposium was hosted specifically for patients, their families, and their caregivers. This Symposium not only had speakers presenting up-to-date information to help patients with quality-of-life solutions; we also had additional activities around breathing techniques, Tai Chi, and art therapy workshops. 

Funding

We provide research grants and additional funding to organizations such as the Leukemia & Lymphoma Society, the National Bone Marrow Transplant LINK (MBNTlink), the Blood and Marrow Transplant InfoNet (BMTinfonet), and others. Prior to 2010, we provided funding for research to several major research hospitals as well.

Looking To The Future

The Meredith A. Cowden Foundation is growing and developing new programs and ideas. We are working to increase our reach through the development of a Patient Advocacy Program with the goal of increasing connection within the GVHD community, as well as providing educational and supportive opportunities for patients, family members, non- professional caregivers, and friends.

Funding & Support Opportunities

Our main source of funding comes from pharmaceutical companies. We also receive support from corporations, hospitals, and individuals. We are currently requesting sponsorship to grow our Foundation, continue the Symposia, and expand our other activities.

We appreciate support in all forms. If there is an area of our work that resonates with you, please let us know and we will set up a discussion meeting to explore our potential collaboration and support opportunities.