Bethany Hornthal was on a bike ride with Laura Esserman, MD, in 2010 when she first heard about preventing hair loss during chemotherapy. At a lunch stop, Esserman drew a diagram about scalp cooling on a paper napkin, saying it was being used successfully in Europe but needed funding to get off the ground in the United States.
Hornthal was working as a consultant to raise awareness and funds for projects at the University of California at San Francisco Breast Care Center. She tapped into philanthropic funding from the Laszlo N. Tauber Family Foundation to support the first U.S. clinical trials of automatic scalp cooling, which led to FDA clearance of DigniCap five years later.
But Hornthal thought it didn’t seem equitable that only patients with financial resources would be able to save their hair. “I didn’t want to help bring something to this country that only affluent people could take advantage of,” she says.
Hornthal learned about the efforts of Patsy Graham in Austin, Texas, a breast cancer survivor who had used the Penguin Cold Cap and wanted to help others.Graham had set up the nonprofit Cold Cap Assistance Projects and begun providing scalp cooling grants, but before long, the demand grew overwhelming.
Hornthal and Graham joined forces, renaming the organization HairToStay. The nonprofit gives scalp cooling subsidies to people nationwide, raising money from individuals, philanthropic organizations and the hair care industry. Salon-a-Thons in May, in honor of Mother’s Day, and in October, for Breast Cancer Awareness Month, encourage salons across the country to donate proceeds, as part of what Hornthal calls a “hair roots movement.”
HairToStay offers subsidies for people with annual incomes up to 300 percent of the federal poverty level—about $36,400 for an individual or $75,300 for a family of four. The usual maximum subsidy is $1,000. Special targeted donor funds provide higher subsidies for patients treated at specific centers or living in certain regions. Another nonprofit organization, the Cold Capital Fund, offers assistance for people in Maryland, Virginia and Washington, DC.
To date, HairToStay has raised more than $1 million and given subsidies to nearly 800 recipients. The goal for 2018 is to provide 1,000 people with the chance to avoid hair loss during treatment.
“HairToStay helps level the playing field so that maintaining privacy, identity and a sense of well-being during chemotherapy is not limited to those with means,” Hornthal says. “It’s the difference, when you look in the mirror, of seeing yourself rather than seeing a cancer patient.”
Click here to read the feature article “Spare Your Hair During Chemo.”