07/25/2013 01:05 pm ET Updated Sep 24, 2013

A Peloton to Stave Off the Loneliness of Orphan Cancer

After what was described to us as "routine" surgery to remove a fibroid, my wife, Erica, was diagnosed with Myxoid, uterine leiomyosarcoma (LMS). That was the first shock. The second? The cancer is so rare, each year fewer than 100 people in the country receive such a diagnosis.

LMS is a disease we'd never heard of, which is surprising since Erica and I have spent the past 20 years raising money for and donating to cancer research and treatment at Dana-Farber Cancer Institute in Boston. Many of our friends are cancer researchers and oncologists. For two decades we've ridden in and have worked for the Pan-Mass Challenge, the annual 190-mile bike-a-thon that raises money for Dana-Farber. In short, as laypeople go, we considered ourselves to be relatively well educated about cancer.

Then we learned about "orphan" cancers and felt both uneducated and alone.

LMS is a sarcoma of the soft cell tissue. Sarcomas overall make up just five percent of all cancers. LMS makes up one percent of that five percent, and Erica's strain of LMS accounts for half of one percent of that one percent.

Two days after Erica's diagnosis, our first medical visit was with Dr. George Demetri, Director of the Center for Sarcoma and Bone Oncology at Dana-Farber. We then went on to visit with teams at both Duke and Memorial Sloan Kettering Cancer Centers. The first indication that we were in for an uphill climb: each of three leading sarcoma centers in the country had a different recommendation for treatment plans.

I started reading scientific research papers. I met with other senior doctors and researchers and tried to learn everything I could about LMS research, drug opportunities and treatment options. It became clear fairly quickly that the leading medical and researchers in the world have very limited knowledge about LMS. We learned that "it's complicated" translates to "we don't know anything."

We slowly began to absorb our reality and comprehend the added anxieties and duties of being a patient and caregiver in the world of so-called orphan diseases. Instead of a clear path of treatment, we received different opinions about how to best utilize untested or inconclusive treatment options.

Medicine, we learned, is a numbers game.

Funding for research and treatment for orphan diseases is, at best, insufficient. Pharmaceutical companies are uninterested in creating or marketing a potential drug if the chance of earning profits is negligible. When there are many people to be served by treatments and research, there is funding. When few people form the potential market, government and private investments are scarce or nonexistent. The system is stacked against rare cancers and other orphan diseases.

It also became clear that we would need to raise funds to research LMS in order to expedite discovery of a targeted treatment for Erica's, and others', cancer. We also would need to harness and leverage the few doctors and researchers who are active participants in trying to unlock the secrets of LMS and other sarcomas.

As a competitive amateur athlete, I've spent the past 20 years running, riding and swimming for fun. I've competed in Ironman competitions and as a PMC rider and runner with the Dana-Farber Marathon Challenge to raise money for cancer research. The absolute best way I knew to raise money was to ride in the PMC, which is the most successful athletic fundraising event for charity in the country, to date raising $375 million for cancer research and treatment at Dana-Farber. It is also among the most efficient as it gives 100 percent of every rider-raised dollar directly to the cause.

On August 3, 4,100 cyclists will ride up to 190 miles in the Pan-Mass Challenge on Team Erica's Entourage with the goal of raising $1.5 million for the Erica Kaitz LMS Research NOW Fund at Dana-Farber. The money we raise will fund research for LMS under Dr. Demetri's guidance. We will be among the 5,500 cyclists riding in the PMC with the collective goal of raising $38 million.

The money Erica's Entourage will raise will go on to help people with other diseases as well as LMS. Researchers are finding that much of the exploration in molecularly inspired drugs, immunotherapies, epigenetics and other new promising areas of inquiry are crossing disease lines and may be relevant to bigger cancers as well as rare cancers. Information about one rare cancer is leading to information about other rare or common cancers.

Research progress for rare cancers and other orphan diseases will be made through private direct funding. It will simply not happen through grants made by the National Institutes of Health or National Cancer Institute. Instead, it is up to us.

Donations to the Erica Kaitz LMS Research NOW Fund at Dana-Farber can be made here.