Doctors Think My Cancer Can't Be Treated—So I Raised $6.5 Million to Prove Them Wrong

Jen Babakhan
Courtesy Shepherd

When David Hysong got a diagnosis of terminal cancer, he'd accomplished more than most people can in several lifetimes. In 2012, Hysong was in his mid-20s and volunteering in Cambodia as an investigator of sexual enslavement of children when he got clipped by a tour bus. While most people might take time to recover from such an accident, on a dare Hysong applied to Harvard and got in, earning a masters in Divinity. Then, inspired by his father's experience, he joined the military and began training to become an officer in a U.S. Military Special Operations Community. But then things went wrong—he was diagnosed with a rare cancer that he was told would take his life.

During the demanding training—"If you come out of that, they know you're ready to lead—not just survive," Hysong tells Reader's Digest—he was diagnosed with swimmer-induced pulmonary edema. "I noticed I didn't quite feel like myself, and a friend noticed a lump in my neck. The ENT that I saw thought it was a swollen lymph node from my illness, but he sent it to pathology for testing after removing it to be sure." He was smart to follow up: A lump in your neck is one of the 30 cancer symptoms you should never ignore.

The lump was adenoid cystic carcinoma—a rare head and neck cancer that spreads to the brain and lungs. Typical treatment is surgery and radiation; the bad news is that there is no chemotherapy known to work for this type of cancer. Hysong, only 27 at the time, took the diagnosis in stride, even though the prognosis was grim. "The doctor did another surgery to remove my salivary gland and surrounding lymph nodes. The cancer hasn't metastasized yet—but the doctor said they know that it will come back in my brain or lungs, and at that point, there's nothing they can do. Everyone with this cancer dies."

Courtesy Shepherd

This news led him to research his disease with a laser-like focus. "I wanted to know my enemy—what drugs were on the market. What I found is that the only cancer drugs that get made are the ones that make the most money for companies." He points out that rare cancers are actually pretty common—as a group: "Of the 400 distinct types of cancer, 375 of them are considered rare, and over 80 percent don't have a targeted therapy."

Hysong says he felt directionless after his diagnosis—until one day: "The thought suddenly came to me, 'What if I created a foundation that makes the medicines no one else will make?'" That was the day he started Shepherd Therapeutics. It's a crowd-funded pharmaceutical company, says Hysong, that is created by patients for patients. Shepherd is comprised of researchers and biotechnical experts who share one goal: To never leave anyone out who could benefit from their drugs. "I gathered incredible people who left high-profile jobs and took major pay-cuts. We don't believe corporate greed should decide who lives and dies. No one should be left to die because there isn't a treatment for their type of cancer."

Today, Hysong, 31, says he's living in "the middle"—that's what people with adenoid cystic carcinoma call the time during which they're waiting for the inevitable return of their cancer. "I feel great, and I go back to Boston every six months to be scanned. The cancer comes back for everyone, but I'm still trying to save my life." Shepherd Therapeutics relies on donations—the foundation has seven medications currently in development, all to treat rare cancers. "I don't know of another group that's doing this on the scale we are. I'm not interested in making a billion dollars—I want to save a billion people." Hysong aims to be at the forefront of cancer therapy research—like these 23 amazing cancer breakthroughs.