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My Personal Journey With The Cutaneous Lymphoma Foundation

Pierluigi Porcu, MD

Ohio State University Comprehensive Cancer Center
Columbus, OH

Approximately 10 years ago, as our discussion about treatment plans, her upcoming summer days at the pool, and the deep meaning of life, was drawing to an end, an ever-assertive and dynamic patient mentioned that a woman in Michigan, Judy Jones, was leading an advocacy organization called the Mycosis Fungoides Foundation.  My patient had long been a member of the Foundation’s online community and implied that, if I was serious about being a mycosis fungoides doctor, I should contact Judy and get involved.

So I did.

I sent Judy an e-mail, stating that I was an oncologist and a lymphoma investigator at the Ohio State University (OSU) who had a particular interest in T-cell malignancies and cutaneous lymphomas. My career had, until then, focused on studying new forms of immunotherapy for B-cell non-Hodgkin’s lymphoma, including Epstein Barr Virus-related lymphomas, but I was developing a growing curiosity about the [then] orphan topic of T-cell lymphoma.

Not having a local dermatology partner at that time, I was keenly interested in reaching out to experts outside of my specialty and learning everything that I could about skin-directed therapies, symptom management and the broad and mysterious world of cutaneous T-cell lymphoma (CTCL).  Judy called back and offered what I will always remember as one of the most engaging welcomes I have ever encountered. She said: “Hey, where have you been all this time? Buckle up. We got work to do.”

It turns out that Judy has always been a believer in bringing together people from diverse backgrounds, working toward a shared goal: curing CTCL. The Foundation already had a Medical Advisory Board composed of a distinguished international panel of clinicians and researchers from various specialties, under the leadership of Dr. Stuart Lessin.  But, apparently there was plenty of work to share, and the rookie spot was open. I sensed a great opportunity and I joined.

Almost 10 years later, I am impressed by the growth of the Foundation and by its achievements. One could argue, without fear of rebuttal, that Judy and her team have educated an entire generation of patients, families, and physicians, over nothing less than the North American continent. As the readers know, in 2005 the Mycosis Fungoides Foundation changed it name to the Cutaneous Lymphoma Foundation to reflect a broader and more inclusive focus on the larger group of diseases known as primary cutaneous lymphomas (PCL). In addition to CTCL, the focus now explicitly includes cutaneous B-cell lymphomas, CD30+ anaplastic large cell lymphomas, and related disorders such as lymphomatoid papulosis (LyP). It is likely that in the future, as the Foundation expands its educational outreach and new resources become available, additional rare entities, such as dendritic cell and NK cell neoplasms will also be included.  Support and assistance for patients affected by these uncommon and aggressive disorders are sorely needed.

In 2009, the Foundation organized and hosted the Cutaneous Lymphoma Summit in New York City. I was privileged to serve as the Co-Chair of the Summit with Dr. Stuart Lessin. The Summit broke new ground by being truly multidisciplinary in the composition of its constituent faculty and by inviting scientific presentations from a variety of fields including epidemiology and genetics, basic immunology and psoriasis, B-cell lymphomas, stem cell transplantation, symptom management, and practice models for multimodality clinics.  Thanks to the hard work of the faculty, the dedication of the Foundation staff, and the enthusiastic participation of patients and families, the Summit was a great success and, I believe, a milestone in the continuous growth of the Foundation as an organization of increasing international outreach and relevance. Further growth and progress will, no doubt, follow the recent recruitment of Jennifer Viano, the young and capable new CEO of the Foundation.

My own experience working with Judy, Jennifer, Dr. Lessin and all of the Foundation team has been one of uninterrupted learning and collegial collaboration.  My sentiment is overwhelmingly one of gratitude.  As an advisor to the Foundation, I had the opportunity to interface with dozens of experts on cutaneous lymphomas across the world and share a role in the effort to put an end to the misery that these disorders cause to our patients.  As a speaker at many Foundation educational forums across the U.S., I had the privilege to meet patients, families, and community physicians; answer (and ask) questions; and learn about resilience, endurance, hope, love and dignity.  This I have deeply internalized and carry with me at all times.

The Foundation has long served as a chief catalyst and medium for collaborative interactions between clinicians and researchers from different disciplines. This is the result of the diligent and persistent lobbying work that Judy and Jennifer do every day on behalf of patients and their families. They have been tireless in nudging me and others into being ever more collaborative, finding common ground, identifying opportunities for partnership, and staying focused.  In this effort, I believe, the Foundation has found a responsive and dynamic partner in the United States Cutaneous Lymphoma Consortium (USCLC).

Finally, it is thanks to the Foundation that I came to know and value my current dermatology collaborator at OSU, Dr. Henry K. Wong, an accomplished physician-scientist who led a productive CTCL research program at Henry Ford Hospital in Detroit, MI before joining the Ohio State University Comprehensive Cancer Center last year. Dr. Wong has brought a wealth of knowledge and experience to our program, transforming it into a true multidisciplinary collaboration, in the best spirit of the Foundation. For that I am very grateful.

Pierluigi Porcu, MD

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