Since the Foundation’s inception in 2007, the Cowden family’s multi-faceted understanding and lived experience with GVHD—both from the patient and caregiver standpoint—has informed the direction of the Foundation both through our founders, Gerry & Marti Cowden, and Meredith Cowden herself, who took over as executive director in 2025.
Moving forward, this family involvement and steering of the Foundation will continue, but in a new way—come fall 2026, Meredith will be stepping down as executive director to transition to a role on the Board of Directors where she will return her focus fully to her passion: patient advocacy.
“It’s been an honor serving as executive director this past year, and an experience I am walking away from having learned so much not only about myself, but about what’s best for the Foundation,” says Meredith.
“As a mental health counselor and person living with GVHD, it’s become increasingly clear to me that my lived experience and desire to help my fellow survivors can best be utilized outside the role of executive director, where I have more time and capacity to devote myself to advocacy, education, and research initiatives. I’m excited for this new chapter, both for me, personally, and the Foundation as a whole.”
A Patient Advocate at Heart
Meredith was only 19 years old when she was diagnosed with acute myeloid leukemia (AML) in 2001. After receiving a stem cell transplant that cured her cancer, she went on to develop both acute and chronic graft vs. host disease (GVHD), a common complication of stem cell transplantation.
“I had a pretty rare manifestation of GVHD back then called myositis. It was in my muscles, and the doctors had a really hard time figuring it out. It got really, really bad,” Meredith recalls. “It was very difficult to know how to handle it, what to try, and even how to understand what was happening. It was a confusing time for me and my family. Once it was identified as GVHD, my parents decided they wanted to create the Foundation to keep other people from having to go through a similar situation.”
In the Foundation’s early days, says Meredith, there wasn’t a lot of time for active involvement in the day-to-day—between battling the ups and downs of GVHD and attending graduate school to become an art therapist and counselor, life was hectic.
It wasn’t until 2015 that she was able to dive in and help on the patient advocacy side of the organization, spearheading the patient portion of the Foundation’s annual GVHD Symposium.
Around that same time, the opportunity to participate in speaking engagements started to increase, too—something Meredith continues to enjoy and prioritize to this day. The first, she remembers, was a talk she gave during the Cleveland Clinic’s Survivorship Day, followed by an event for the Leukemia and Lymphoma Society® (now Blood Cancer United®). Since then, she’s had the privilege of presenting on behalf of pharmaceutical companies and at medical conferences all over the world.
“I established myself as a spokeswoman for the Foundation through those early experiences,” she says, which progressively opened more and more doors and led to an invitation to chair the National Institute of Health (NIH) Chronic Graft Versus Host Disease Consensus Consortium Patient Advocacy Summit in 2019.
“That’s really when I started to take on a much larger role in identifying how we could really meet patients’ needs…looking to see where the gaps exist for patients and trying to provide education and support around those needs. The Foundation also had the chance to collaborate on the NIH guidelines for GVHD and work with other organizations around treatment and things of that nature—more involvement on the scientific side as well as the patient side.”
By 2022/23, as part of the natural evolution of her work, Meredith officially adopted the title of director of patient advocacy for the Foundation. Then, in April 2025, she became executive director of both the Foundation and the Foundation’s partner initiative, the GVHD Alliance—all while continuing to operate her independent counseling practice.
Now, as she prepares to redirect her full attention back to helping people in her day to day—whether those living with GVHD or her counseling clients—she’s more confident than ever that it’s exactly where she’s supposed to be, and where her true passion lies.
“I’ve had clients who have GVHD or some other kind of chronic health condition, and I’m able to not only use my clinical skill set to help them, but I also understand what they’re going through from a lived perspective. I think that certainly informs and helps the therapy practice that I have. And on the flip side of the coin, I think my therapy background and understanding of mental health and psychology also helps me in terms of how I think about areas of focus for the Foundation, and the ways we work to achieve it.”
“I’m excited to focus on where the gaps and barriers exist for GVHD patients, and continue finding ways for the organization to help address those needs. I also really love being involved in research, and integrating the patient experience into the exciting breakthroughs that are happening around GVHD.”
Giving a Voice to Those Living with GVHD
Giving people living with GVHD a “seat at the table” has always been Meredith’s ultimate goal—whether by integrating patients’ voices into the Foundation’s annual National GVHD Symposium or hosting roundtables that provide people the opportunity to share experiences, it’s all done in the hope that those insights will inform larger healthcare models and research.
As a mental health counselor, facilitating effective communication between people living with GVHD and their healthcare providers is of particular interest to Meredith as well.
“Sometimes the two groups are speaking in different languages, essentially; the symposium, especially, is a great way for both sides to learn from the other to expand understanding and enhance not only treatment outcomes but quality of life, which looks different for each individual.”
“Whether we’re talking about clinicians, researchers, and healthcare professionals, or patients, caregivers, and families or friends—we want to bring everyone together to figure out how to live with this disease in the best way possible, and help people have a really good quality of life…we’re helping people learn how to live well with a chronic disease.”
Staying Positive
GVHD, admits Meredith, certainly has a way of upending life as someone knows it—she dreamt of becoming a professional artist before her diagnosis, she says, an aspiration she long ago realized she had to release in the face of her illness. Even though things haven’t turned out as she once imagined, however, her life is no less full of purpose and meaning, and she’s pivoted to utilizing her love of art as a tool in her clinical practice, teaching people how to express themselves through art therapy. It’s just one example in a long list of many of the ways she’s used her life experience and natural talents to continually give back. She wants to continue helping others find that same fire within themselves.
“I love the results we bring about through the Foundation. I love what I’ve seen it accomplish, what I’ve seen it do to help others—whether that’s educate or connect people or identify needs and fill them…I have a lot of passion for what we’re doing here.”
“I’m extraordinarily proud of Meredith,” says Matt Kalaycio, MD, one of Meredith’s long-time physicians and director of the MACF board. “She exemplifies what can be accomplished with a positive attitude.”