25th Anniversary: Building Hope Since 1996

Guest blog post from Jeff Ashby, late husband of the MRF’s founder, Diana Ashby: 

The Melanoma Research Foundation (MRF) officially started in 1996 by Diana Merriweather Ashby with a goal of giving hope to melanoma patients and family members. Diana succumbed to the disease soon after, but not before she had laid the roots of an organization that would eventually make a huge difference in the lives of so many others. This is a short story of the creation of MRF, as I, Diana’s husband, recall it 25 years later. Some of the details have faded, but my memories of that time with Diana are still clear, and my recollection of her vision for the MRF is forever etched in my mind. 

Diana Ashby was a bright point of light in the universe, a beautiful and caring woman with a special gift for humor and practical jokes. She loved small creatures and moved through the world with a combination of natural grace and unusual wit. Diana’s deep blue eyes and long, curly red hair were striking features, but it was her close-lipped smile with a slight tilt of the head that gave a better hint of who she was. Even so, what I saw in Diana’s character at the end of her life as she struggled against the cancer spreading in her body changed my life and that of those around us. 

Diana’s journey began with a small mole on her back that prompted a visit to the dermatologist, a diagnosis and removal of the melanoma, and an assertion that she was cured. As many of the patients reading this may attest, that small mole was just the start of a roller coaster of good news and bad, doctor visits and surgeries, searching for treatments and looking for continued hope. 

In 1995 there was little hope for metastatic melanoma patients, with only experimental trials and surgeries as treatment options. Interferon treatment was in early trials as well as a few vaccines using the patient’s own melanoma cells or cells of other patients as the basis. Sentinel node biopsy and other preliminary measures were still years away. Progress for new treatments was slow and uncoordinated among researchers. Anecdotal cures and medical scams were numerous. 

The internet was just beginning in 1995 and chat rooms were starting to be used for sharing information, including some for melanoma patients. Diana latched onto these to find more information and she would sometimes stay up well into the night chatting with other patients and family members.  It was there that she began the shift of focus on her own care to that of others. 

As Diana’s disease spread to her organs and eventually to her brain, she searched relentlessly for something she could do for her chat room friends who included patients her age as well as the family members of both young and old people with melanoma diagnoses. Gaining counsel from Dr. Sewa Legha at M.D. Anderson Cancer Center in Houston, Diana learned that clinical trials of new drugs lacked funding. She determined that $525,000 was needed to support the testing of just one new drug, and she chose a product called betulinic acid that had shown positive results in a study with mice as her first treatment to champion. 

With her own time drawing short, Diana established the MRF from her computer in our south Texas home. Her goal was simple; raise $525,000 to get a new treatment option through clinical trials and FDA approval.  Her vision was equally simple: give patients and family members a reason to hope and an effective way to contribute their energies. 

Diana died from metastatic melanoma eight months later, at the age of 34. The MRF was barely breathing, with just $15,000 in the bank from small donations and community fundraising. Her loss left a huge void, but her chat room friends picked up the banner and slowly brought the MRF into a stable existence, with superb and passionate organizational leadership that to this day still honors Diana’s vision. 

First MRF Board Meeting after Diana’s Passing

Diana could hardly have imagined the impact the MRF would eventually have on developing treatments for patients, providing a way for family members to assist, coordinating national research strategy and giving volunteers a venue to combine their energies toward a common goal. In 25 years, the MRF has grown from a grassroots organization with a $5,000 annual budget, to a nationally recognized charity that collects and strategically distributes millions of dollars each year in scientific grants. Today, patients can receive a melanoma diagnosis and know that there is a strong reason to hope for a full and enriching life. 

One day in our future, there will be a cure for melanoma and no longer a need for Diana’s vision. If she were alive today, that would be Diana’s wish. 

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