GREENSBORO, N.C. — What began three years ago as a race against time by a Greensboro physician to speed efforts to fight chordoma, a rare form of cancer that affects her college-age son, has grown into a quickly-growing nonprofit that has connected and focused an international community of patients, families, physicians and scientists on the disease.
The Chordoma Foundation, which has raised over $1.2 million since it was formed in 2007, has hired a chief operating officer and set a goal of raising $4.9 million over the next two years.
Founded by Simone Sommer and her son Josh, who was diagnosed with the disease in May 2006, the foundation aims to improve the lives of chordoma patients by developing treatments and a cure for the disease.
Chordoma, a rare bone malignancy that occurs along the spinal column, affects roughly one in every million people in the U.S., with about 300 new cases diagnosed each year.
There are few effective treatments and no cure for the disease, and most people who have it die within 10 years of diagnosis.
The foundation in its first three years has focused on research and fundraising, both of which have outpaced the organization’s capacity to operate and raise money, says Michelle Speas, its new chief operating officer.
A veteran fundraiser who formerly was vice president of development and external relations at Old Salem Museums & Gardens, Speas will oversee operations, fundraising and coordination of volunteers.
She also will oversee completion of the organization’s expansion, develop metrics to track the foundation’s impact, and develop a marketing and communications plan.
With annual operating expenses this year totaling $400,000, the foundation employs four people working full-time and two working part-time.
Its board of directors and scientific advisory board both have international memberships.
Donors in the U.S. and eight other countries have made gifts, including several of more than $100,000 each.
The foundation’s year-end fundraising effort in 2009 through direct-mail and email appeals raised at least 10 percent more than its year-end appeal in 2008, Speas says.
The foundation also has raised over $35,000 on Facebook.
With a database of donors from throughout the world, including chordoma patients and their families, as well as scientists and physicians working in the field, Speas says, she will be looking for ways to cultivate those far-flung donors.
She also will be looking for ways to clear legal hurdles to international giving that were created after 9/11 to prevent funding of terrorist groups posing as charities.
Because the foundation’s network of donors and others tend to be savvy about technology, and are connected to one another through an online chordoma community at the foundation’s website, she says, she plans to use the web to connect with donors and “make their relationship with the foundation real and personal.”
While online giving has not grown at the pace that some expected 10 years ago, she says, “we do know that people who do go online and make a gift, make a gift twice the size of a typical direct-mail gift.”
While Speas works on building the organization, she says, Simone and Josh Sommer will focus on developing a biobank for chordoma tissue, to be launched this year, that will give scientists and doctors engaged in chordoma research access to the tumors.
Simone Sommer, who serves as the foundation’s president, also is developing an online system for patients to navigate information and resources about chordoma.
And the foundation is funding a comprehensive survey of the chordoma genome.
Josh Sommer, who was a freshman at Duke University when he was diagnosed with the disease, now is completing a two-year Echoing Green fellowship for social entrepreneurs and serves as the foundation’s executive director while he is on leave from Duke.
Speas says her goal is “to drastically enhance revenue so we can continue on this rapid trajectory to find effective treatments and ultimately a cure.”