History of HairToStay
Two Paths Converge
The HairToStay story began in February of 2010, when breast cancer surgeon and researcher Laura Esserman, MD, MBA and Director of the Carol Franc Buck Breast Care Center at UC San Francisco wrote down the words “scalp cooling” on the back of a napkin at the Ferry Building restaurant in San Francisco and handed it to Bethany Hornthal. Dr. Esserman’s interest was spurred by a patient at the Breast Care Center who was about to undergo chemotherapy. The patient had heard about a scalp cooling device in Europe that women were using to save their hair during chemotherapy. She asked her doctor, Hope Rugo, MD, if UCSF could make the device available, and Dr. Rugo forwarded the request to Dr. Esserman.
Bethany began to research “scalp cooling” and it became clear that if a scalp cooling device was going to be operated by a medical facility like UCSF it would have to be cleared by the FDA. Dr. Esserman told Bethany that if she could find funding for a clinical trial, she would ensure that UCSF would become the inaugural site for the research that could lead to FDA Clearance.
Bethany then approached Dr. Ingrid Tauber, a psychologist, and president of the Laszlo Tauber Foundation, with a proposal, code-named HairToStay. Dr. Tauber, understanding all too well how emotionally devastating hair loss can be to patients, generously agreed to fund the necessary research.
Bethany stayed involved in the project for the remaining 5 years, working with UCSF, Dignitana (the Swedish developer of the Dignicap scalp cooling system) and Dr. Tauber. On December 8th, 2015, Bethany boarded a plane bound for the San Antonio Breast Cancer Symposium, hoping to be able to announce the FDA Clearance. Just as she landed, the FDA granted the Clearance, and the team from UCSF and Dignitana toasted the wonderful victory they had achieved for patients across the United States.
Receiving FDA Clearance was the initial goal, and might have been the end of the story. But reality intervened as it became increasingly apparent that this amazing new breakthrough would not be covered by insurance carriers for many years, thereby dramatically reducing the number of patients who could afford the treatment.
Bethany and her colleague, Jeff Bork, immediately began work with Dignitana to find a way to help patients afford scalp cooling. In the course of their work, it became clear that creating a non-profit organization dedicated to subsidizing ALL scalp cooling patients, whether using Dignicap or another solution, was the only answer. It also became clear that a very generous woman named Patsy Graham had been subsidizing scalp cooling treatments through CCAPS, a non profit 501(c)(3) organization, for the past four years and was in search of a way to scale up her operation.
After receiving a breast cancer diagnosis in 2010, Patsy underwent her first chemotherapy regimen and proceeded to lose almost all of her long dark curly hair. However, by the time she was ready for her second infusion, she had heard about “Cold Caps” that could help protect her hair and enable it to grow back during her remaining chemo treatments.
She ordered the caps and by the time she had completed her chemotherapy program, her hair was already growing back in. Understanding how it felt to be a bald woman and what it meant to be able to regain her hair during chemotherapy was all Patsy needed to inspire her to want to help provide this option to other cancer patients. So she set up a non-profit called Cold Caps Assistance Projects (CCAPS) and began by subsidizing patients in Texas. In early 2014 CCAPS went national and many more patients requested subsidies.
But what started out as a stream of applications, has turned into a flood over the past year – and especially since the FDA Clearance and accompanying visibility that scalp cooling has received.
Patsy was having a hard time keeping up with the operational and financial demands when the phone rang in February. What she assumed was another subsidy request coming in was actually Bethany, calling Patsy to find out what her vision was for CCAPS.
After a few weeks of back and forth calls and reference checking by both parties, Bethany, Jeff and Patsy decided to join forces, and launch HairToStay as a DBA of CCAPS, with a mission of building a national subsidy program that could be supported by partnerships with both philanthropic and commercial organizations.
So here we are! And our goal is for HairToStay to be HereTo Stay as long as we are needed.
If you are an individual interested in making a tax-deductible donation to HairToStay click here.
If you are a commercial or non-profit organization interested in donating or partnering with HairToStay click here.
Download the HairToStay Organizational Backgrounder
HairToStay is a 501(c)(3) non-profit organization, so donations are tax-deductible. HairToStay spends most of its money on financial aid for patients. You may request our operating expenses from info@HairToStay.org.