This personal essay by Mark Kenny was featured in Episode 20 of the BloodStream Pod.
My name is Mark Kenny and I'm a father to four hemophiliacs in Southern California, two girls and two boys. The boys have severe hemophilia with inhibitors. The oldest tolerized, but the youngest still has an active inhibitor.
I'm an entrepreneur working primarily in healthcare, but this wasn't how I envisioned my adult life when I was younger. I grew up in St. Louis, MO, with dreams of becoming a rockstar and making movies. When I graduated high school in 1993, I wanted to go to USC for film school, but I didn’t earn scholarships and tuition was far more than I could afford, so I began my degree studying political science at University of Missouri in St. Louis. After a couple of years, unhappy with the prospect of entering the workforce with a political science degree, I joined the military (seeking a break from school to figure out what I wanted to do and for money to finish my degree). Fast-forward to a decade later, I was living in Wichita, Kansas, when I met my partner, Amber.
When we met, Amber had three kids that all had hemophilia. I was not very familiar with the disorder at the time, but a friend of mine from college had it, so I was aware that it was a bleeding disorder. There was no treatment center in Wichita, so whenever the kids had to go to the HTC, Amber would have to travel 2.5 hours each way and she often spent weeks at a time in the hospital. This was my introduction to life with bleeding disorders, and though there was a lot I didn't understand, I loved Amber and the kids and I wanted to help, so taking on the role of "hemo dad" felt right even if it was unfamiliar.
Because Amber and I weren’t married, I was limited in how I could help her. For example, I had no legal guardianship, so I couldn’t take the kids to appointments or make medical decisions. Instead, I tried to help by learning as much as I could about the disorder, the treatments, how they work, what new therapies were on the horizon, what resources exist to help us navigate this disorder... so that Amber wasn’t alone on this journey and so she wouldn’t become discouraged along the way. We tried to become subject matter experts on hemophilia. It took many years of attending both local and national conferences and events, but Amber and I learned a lot as we became more involved and we were able to make better-informed decisions, which helped us to feel more confident as parents.
One of the things I quickly realized was that if I was going to be a true partner to Amber, in the sense that I am her helper, I needed a career in which I could work remotely, so that I could travel when necessary or help out with the kids at home (getting them to and from school and activities…). At that time, I was working as a Museum Manager and my boss was very understanding and supportive during some really difficult times, but I knew that it wasn’t sustainable for me to be gone for several weeks with little- to no notice… and it wasn’t fair to me or my family to use all my sick days and vacation days on hospital stays or local and national educational events. I decided to complete my degree in Communication with an emphasis in electronic media. I felt that this degree would give me the flexibility that we needed as a family for me to work remotely… and it has.
So my journey to becoming an entrepreneur evolved more from our family's needs than my own aspirations. Now, I look for opportunities to use my entrepreneurial skills to help the bleeding disorders community. For example, I recently participated in the Hacking Hemophilia event in Boston that was organized by MIT Hacking Medicine, CSL Behring and NHF. My team comprised of three hemo dads, including myself, and we had two primary goals:
1) to simplify the process for people doing infusions and
2) to reduce medical waste.
So we came up with something we call an "Infuzr Pack," a customized infusion package made specific to each patient’s needs (the right size needle, syringe, latex-free supplies...) and tastes (Batman or Dora band aids). So rather than receiving all the supplies one could possibly need in separate packaging and having too much excess, everything that individual needs/wants is sealed together in one unique package made especially for them. Patients and/or caregivers could select and order their preferred supplies through an app or website. We would coordinate with specialty pharmacies to deliver the Infuzr packs with their medication. Our thought is that a product like this could reduce the response time for critical injuries, such as head bleeds, as well as simplify the infusion process, reduce risk, improve adherence and give people in our community some degree of control in an aspect of their lives where they often feel like they have none. My teammates and I were honored to win first place at the hackathon because there were so many great ideas presented, so we are now using the prize money to continue developing the Infuzr Pack. It’s important to note that Amber developed the concept years ago and has ensured that every one of our pharmacies send pre-packaged infusion supply kits for our family. I just stole her idea and took it to Boston, to develop it further into a business-to-business model so that every family can benefit from Infuzr Packs.
I never dreamed of becoming an entrepreneur but now that I am, I can’t imagine a better way for me to contribute to my family and the bleeding disorders community. If you have ideas for a new product, or thoughts on how to improve the lives of people with bleeding disorders, I encourage you to follow your curiosity and take risks, even if you might not consider yourself an entrepreneur. There is so much opportunity for innovation, and no one knows more about our community’s needs than we do.