Diane's Intro to HLA Testing
My personal walk
Hi I am Diane Tolley. I am the Sales and Marketing Director for Kashi's HLA testing lab. I was thrust into the transplant world in 1988. My daughter Michelle was diagnosed with Non-Hodgkin's lymphoma and received a bone marrow transplant using her own marrow. We never found a perfect HLA test match for my daughter.
A child is not supposed to die before her parents, but cancer doesn't have a time table. I made a promise to Shelly after she died, if I could help in any way, no other person would have to walk the walk that our family walked alone. When I see Shelly again I will be able to say, "I couldn't help you but I helped as many people as I could". In honoring Shelly, I try to help other patients, donors, families, and transplant related businesses to better navigate the HLA testing system. This is how I have chosen to live without my daughter and to turn our personal loss and grief into something that is productive and touches those that need her help.
I find myself in the position every day of working with patients and families looking for that perfect HLA match. I have no clinical background but I have worked in the system for over 20 years and have literally grown up with it. HLA testing has come a long way in 20 years. I believe and often explain to people I talk to, if Shelly had her disease today she would survive because of the advances in the transplant and HLA testing world. My experience has given me the ability to work within and around the HLA testing system, plus explain that "system" to those that are just trying to find a perfect bone marrow/stem cell donor. In the past 20 years I have worked for two marrow transplant related nonprofits as Executive Director and Recruitment Manager, been a recruiter for a donor center entering people into the Be The Match National Registry with their HLA results and have worked directly with selling HLA testing for four different labs. Through each of these positions no matter the title or job description my overriding goal has and continues to be helping the patient get to transplant as quickly as possible without bankrupting them in the process.