Changes at Chordoma Foundation

Heather Lee
Heather Lee

Todd Cohen

GREENSBORO, N.C. — The Chordoma Foundation and its new chief operating officer have parted ways, and the group is moving its office to the Triangle from Greensboro.

Michelle Speas, a veteran fundraiser who joined the foundation in January as chief operating officer, no longer works at the organization.

She and Heather Lee, chair of the foundation’s board and an associate professor of human resources at Peace College in Raleigh, both declined to comment on the reasons for Speas’ departure.

Lee, a board member who recently was named board chair, succeeding co-founder Simone Sommer, says changes at the foundation reflect “growing pains.”

Having focused more on its mission of fighting chordoma, a rare form of cancer, rather than on building its organizational infrastructure, Lee says, the foundation now is “poised to take off.”
With half its eight-member board living in the Triangle, and many of the scientists its works with based at Duke University in Durham and UNC-Chapel Hill, Lee says, moving the foundation to the Triangle makes sense.

“Inside, we’ve been operating on a shoestring budget for so long,” she says. “Outside, we’ve dealt with world-class researchers. And the inside has not had the infrastructure, and we’re now poised to take off on that and have our inside and our outside match.”

Lee says Sommer, a physician who created the foundation in 2007 with her son Josh after he was diagnosed with chordoma, will continue serving as president and add the role of chief medical officer.

Sommer had worked for the foundation as a volunteer but became a paid employee on January 1, Lee says.

The foundation’s two other full-time paid employees, including an administrative assistant and an executive coordinator, will work remotely and probably commute to the new Triangle office once a week, Lee says.

The foundation still is looking for office space in the Triangle, she says.

Speas, who formerly was vice president of development and external relations at Old Salem Museums & Gardens, was hired to oversee operations, fundraising, coordination of volunteers and completion of the foundation’s expansion, to develop metrics to track the foundation’s impact, and to develop a marketing and communications plan.

The foundation, which has raised over $1.2 million and will hold its third International Chordoma Research Conference and third Chordoma Community Conference in August, has set a goal of raising $4.9 million over the next two years.

Lee says she will be overseeing infrastructure improvements at the foundation.

And she says the Triangle is “ripe with fundraisers” to assist with the fundraising effort.

The foundation now is “gearing up to make sure we have an audit done,” she says. “That’s critical for going to our next level of fundraising, particularly securing grants.”

The changes at the foundation reflect what has “always been tension between a focus on research and building infrastructure,” Lee says.

“We’re now poised to move faster with research, but we can’t any longer choose that over infrastructure,” she says. “We’re in transition.”

But when “push comes to shove,” she says, “the research has taken precedence because people’s lives are at stake.”

Of six children who attended a chordoma conference in 2008, she says, four have died, including her own son, Justin.

“The infrastructure piece is important to support,” she says. “Infrastructure is a means to finding a cure and better treatment. That’s what’s important.”

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