28 Oct 2019
How one foundation assumed leadership in the fight against a fast growing health threat.
"It was 18 increasingly unpleasant months between Alex Cohen’s first symptom—a pain in the sole of her foot—and her diagnosis of Lyme disease. Along the way, she was told she had everything from lupus, fibromyalgia and multiple sclerosis to mercury poisoning from her fillings. 'I had none of the above,' she said. 'Finally, I met this doctor in New York who treated me for Lyme, and it was a new day.' That was about 12 years ago, but it wasn't the end of her journey with Lyme disease."
In fact, it led to the Steven and Alexandra Cohen Foundation’s transformation into the leading private funder of research for Lyme and tickborne illnesses, now among the fastest-growing infectious diseases in the United States. As Alex’s symptoms persisted and diversified in the years after her infection, the Cohens learned what they could about the state of treatment and research for Lyme. They found mostly gaps; against the backdrop of all the other pressing health concerns facing the country, Lyme simply hadn't been a major priority for either private or federal funders."
“There were four or five organizations out there, but their budgets (for Lyme) were maybe a few million each," recalled Jeanne Melino, Cohen Foundation executive director. “But you're looking at a disease that needs hundreds of millions of dollars to help solve.”