Sep. 24, 2020
Posted by Valaree DonFrancesco
At the Head of the Herd is… Susan Thornton, CEO, Cutaneous Lymphoma Foundation
Susan advocates for those living with… Cutaneous lymphoma
Susan is located in… Philadelphia, PA.
How Susan got here… In addition to being the current CEO of the Cutaneous Lymphoma Foundation, I’m also a patient. I’ve been living with cutaneous lymphoma for close to 30 years, so I have intimate knowledge of what it’s like to live with a rare, incurable disease that requires treatment.
I became involved with the Foundation in 2008 when I joined the Board of Directors. I wanted to give back after coming through a very challenging time managing the disease for ten years. It was an excellent opportunity to become part of the community, which led to taking on the leadership role nine years ago.
How Susan’s past work experience lends to her current work in rare disease… I spent 25 years working in health care IT and technology. Years ago, when DRGs and billing systems first hit the hospital market, I had to learn about reimbursement and how billing works. My work required becoming knowledgeable about clinical processes, delivery of care, capturing data, and everything data can support. I never realized at the time how much that knowledge would come in handy. Understanding the terminology and the nuances of access, reimbursement and how the healthcare systems work has helped me bridge the gap for the community I now serve.
What Susan’s hoping to accomplish in 2020… This summer, the Foundation launched a private, online, peer-to-peer community that gives people around the world the opportunity to find each other and connect. People can feel very isolated. This new approach to connecting our global patient community is critical to providing access to support and alleviating those feelings of walking their path alone.
We are also working on enhancing the way we combine virtual and in-person educational programs and events. COVID-19 allowed us to talk to our community and understand how they want to receive information and what topics they’re most interested in. We hope to take what we’ve learned through this experience in 2020 and build a much broader, more robust platform of education and services that can be accessed by more people worldwide.
What Susan sees for the CL Foundation’s next five years… One thing we are working on that I would love to see come to fruition is building a collaborative network with patient organizations around the world. As a small patient population, it doesn’t make sense to have an organization in every country. We envision the Foundation as the hub of the network, collaborating with other nonprofit patient organizations to serve the cutaneous lymphoma patients in their local environment. It’s a big dream.
Also, the Foundation has been providing research funding over the past several years. This experience has shown us the critical importance of funding research and its impact to support breakthroughs in knowledge. In light of that, the Foundation is embarking on a big goal of raising a million dollars a year to do ten multi-year research grants each year. It’s been challenging for our researchers and clinicians to get grant funding for research. Because cutaneous lymphomas are so different from the other lymphomas, it’s crucial to funding more specific research to understand the underlying biology and disease.
Susan’s Do’s and Don’ts for running and effective organization… Do connect with other patient organizations in your space and understand what they are doing. Figure out what their expertise is and where there are gaps that you could fill before you reinvent the wheel. Do surround yourself with really great people who complement your strengths and skills.
Don’t let the more mundane things get away from you. I think some people forget that nonprofit organizations still have to run like a business. It’s essential to stay on top of operations, processes, technology and human resources that support the great work that needs to be done. Plan for investment in these areas.
Susan’s favorite thing about being a NORD member… I love the annual meeting. It’s such a great opportunity to connect with other individuals in the rare disease field who are leading organizations and learn from what they’re doing. There are so many organizations within the NORD umbrella who have, in my opinion, mastered the research funding world and have done a fantastic job. To have access to people who have achieved what my organization hopes to achieve, to ask questions and source tools and tips from them is so valuable.
Where Susan learned to develop her leadership skills… I feel very fortunate to have had access to teachings and training on leadership during my corporate career that others may not have had access to. I’m a lifelong learner, so I’m always looking to understand things, to partake in a class or watch a webinar or find a book to enhance my own skills. I don’t believe you ever master leadership. There’s always something new to learn and someone else you can learn from. Being open to learning is so important.
Susan’s words to live by… I always steal Oprah’s line — “live your best life.”
If Susan found a cure and had to find a new mission, you’d find her… Teaching people how to take care of themselves and empowering them to own their own health and wellbeing.
The last book Susan read… Light is the New Black by Rebecca Campbell
Susan’s hobbies… I’ve recently begun studying herbalism and the effects of herbs on everyday life, which is really kind of fun. It’s very intriguing when you start to study plants and how they’ve been used for thousands of years. I find it amazingly fascinating.