Newsletters

From the Executive Director

by Judy Jones, MFF Executive Director

We’re supposed to be in those “Lazy, Hazy, Crazy days of summer,” when people slow down and take vacations. I hope you are there, because the Mycosis Fungoides Foundation (MFF) isn’t slowing down. We are moving along at an amazing pace. Since our last newsletter, our Board of Directors has met twice and is doing a terrific job of strategic planning, setting priorities, and charting a path to carry us well into the future. I feel very fortunate to be working with this team of dedicated, selfless individuals.

Our congratulations to the National Organization of Rare Diseases (NORD) who celebrated 20 years of championing the cause of rare diseases. The MFF supported one of these issues by attending a news conference and speaking about the necessity of including orphan cancer drugs in Medicare Reimbursement schedules.

I was able to spend time talking to patients at a "Face-to-Face" meeting in Chicago when attending the American Society of Clinical Oncology annual meeting, and also in Boston at the Lymphoma Research Foundation’s Innovations in Lymphoma Treatments program. I had my camera ready to take pictures both times, and was so involved that I completely forgot. It’s my fault that we don’t have these pictures in our newsletter.

One of the most frequent questions patients ask is, "Where can I find a doctor who is familiar with this disease?" Because this is a rare disease, it is important to find someone who is up-to-date on the most recent research and treatment options. In order to facilitate access of CTCL patients to medical facilities with experienced health care providers and comprehensive services in CTCL, the MFF is developing a listing of CTCL referral centers (CTCL Centers of Excellence). This information will be posted on our website.

We appreciate your continued support as we move ahead. Together we can make a difference and offer new and expanded programs and services.