Susan Thornton serves as the CEO of Cutaneous Lymphoma Foundation,
based in Birmingham, Mich. She spent 28 years in the health care information
technology field and has been living with cutaneous lymphoma for 25 years.
What is Cutaneous Lymphoma Foundation? How did it launch?
Cutaneous Lymphoma Foundation (CLF) is first and foremost a patient education, support and advocacy organization. It began when Judy Jones was diagnosed with the most common variant of cutaneous lymphoma, mycosis fungoides, in 1990. She was frightened and didn’t know where to turn to educate herself, or how to connect with other people diagnosed with cutaneous lymphoma. She started an online listserv and began to meet others with similar concerns. From there, she connected with Dr. Stuart Lessin, a specialist in cutaneous lymphoma, and together with $5,000 from the wife of one of Dr. Lessin’s patients who had died from the disease, they began what was called the Mycosis Fungoides Foundation in 1998. The organization was renamed a few years later to the Cutaneous Lymphoma Foundation to include all forms of cutaneous lymphoma under one patient support umbrella.
What services does CLF offer?
In its 16 years, CLF has hosted regular, live patient education programs around the country, in Canada, the United Kingdom and even Australia. These events include expert forums, evening Q&A programs, one-day programs and a two-day patient conference. They bring patients and their loved ones together with experts in the field of cutaneous lymphoma. It’s a great opportunity to learn about the disease, treatments and clinical trials, as well as meet people with similar challenges in an informal setting. These live programs have been the cornerstone of CLF’s patient education services, and are now live streamed so people around the world can participate. A calendar of the events can be found on clfoundation.org, along with in-depth information about cutaneous lymphoma and specialty treatment centers worldwide, and an Online Learning Center with video learning on a wide variety of topics.
We offer printed information too, including a wonderful guidebook for patients and their families, as well as a new patient packet we can send if requested. We publish a newsletter, The Forum, three times a year and a monthly e-news with the latest information of interest to our community. We also offer one-on-one support to anyone who calls or emails. Sometimes, people just need to talk and ask questions or get guidance. All services are provided free to patients and their loved ones, whether it is a live event, printed materials or one-on-one support.
Why is the work of CLF important?
A small patient population makes it important to continue to innovate and evolve programs so that everyone diagnosed with this disease can have access to the best information from the comfort of their own homes. One of the most frightening things a person can do when diagnosed is Google “cutaneous lymphoma”—which is why the goal of CLF is to be the one-stop education and information source for patients and families. The constantly updated information on our website and in our programs is reviewed by experts in the field and uses easy-to-understand terminology.
What is your role at CLF and how did you become involved?
I’m a patient who has been living with cutaneous lymphoma for the last 25 years. I was invited to be on the CLF Board of Directors in 2008. In 2011, I had the unique opportunity to leave my corporate career in health care software and join CLF in a consulting role, managing the programs and services. When the CEO resigned in 2012, the board asked if I would step into that role, where I’ve been since. It is truly an honor and pleasure to be in this position and help take CLF to the next phase in its evolution. I have the privilege of working with an amazing, small, collaborative team of dedicated people both on our staff and on the board. I certainly wouldn’t be able to accomplish everything on my own.
What are some important things for people to know about cutaneous lymphoma?
There are many, but one of the most important is that cutaneous lymphoma is often misdiagnosed as more prevalent skin disorders like eczema, psoriasis, dermatitis or even bug bites. It’s important to understand that if someone has a rash that doesn’t go away, is itchy and shows up in areas on the body that do not get much sun, they may want to ask their dermatologist to do a biopsy (preferably a punch biopsy in an area that has not been treated with topical steroids) to rule out cutaneous lymphoma. For most people who are diagnosed, the disease is early stage, is very treatable, and does not progress to a more aggressive version. The general quote is, “Most people will die with this disease and not from it.” However, quite a few variations exist, and some can be aggressive. It is very important people see an expert in cutaneous lymphoma, even if treatment is managed locally.
What kind of research has CLF done? What research is underway?
While CLF has primarily focused on patient support and education, we have funded several research projects, including: a quality of life study that was conducted by Dr. Marie-France Demierre from Boston University School of Medicine, an epidemiology study conducted by Dr. Martin Weinstock from Brown University in Providence, R.I., and a mycosis fungoides epidemiology study conducted by Dr. Emilia Hodak from Ben-Gurion University of the Negev in Israel. More recently, we have funded small grants for innovative research through our clarions (Curing Cutaneous Lymphoma by Advancing Research, Innovation and Offering New Solutions) award program. We also offer travel awards for young investigators who are presenting cutaneous lymphoma research at various medical symposia throughout the year. We hope to keep expanding our research grant efforts.
Do you connect patients with clinical trials?
We do our best to list the active cutaneous lymphoma clinical trials currently recruiting patients globally on our website. We also share information about what is in the clinical trial pipeline, and we help interested patients connect to open trials. Our programs include a discussion about clinical trials, their importance and what patients should think about if they are considering one.
What are one or two stories that stand out to you from your work with CLF?
There are a ton of stories that stand out. It’s the best thing about the work I do every day: talking to patients, their families and care providers. One of my favorite stories is about a patient in Louisiana. She called late one night in a panic and was totally amazed that I actually called her back from an airport where I was between flights. I think the most amazing thing is her joy for living. No matter what challenges she faces— and she has had many—she inspires me to keep moving forward doing what we do to support people in their journey. She is truly a shining light.
A health care provider that keeps gas cards and gift cards in her desk drawer also comes to mind. She gives them out to patients who are struggling with everyday expenses because of the impact of dealing with this lifelong disease. That deep compassion and caring for the overall health of patients is a common trait of the specialists in this field. We are truly one big, global, connected community supporting each other in whatever way we can. That’s powerful, and I think a bit unusual.
How can patients and their families be involved with CLF?
I would encourage everyone to attend one of our live events, if at all possible. They truly are magical programs. The information is valuable, but it’s the connections, discussions and interactions between everyone in attendance that is really special. If people are interested in fundraising activities or serving in a volunteer capacity, they can let us know via email, firstname.lastname@example.org, or phone, 248-644-9014, ext. 1.
Is there anything else you’d like people to know?
There is hope. A lot of research is being done to understand the biology of the disease, how it works and what targets new therapies should focus on. Many new clinical trials are underway which we hope will result in new, targeted treatments that will make managing this disease easier and more successful for patients. Finally, although this diagnosis can be overwhelming and frightening, patients and their loved ones are not alone. We are here alongside them, step by step to support them. We are in this together and together we will thrive!