Lymphoma Foundations - The Early Days

Back in the old days (ten years ago!), I started ABVD chemo for Hodgkin's Lymphoma (this is back in the real old days when they called it Hodgkin's Disease like it was a rash). I was active on the AOL Cancer Survivors Chat (the second cancer chat on AOL) and was racking up $100/mo AOL bills. I also started my fledgling lymphoma web site not long after (when info on the web was scarce).

One day I received a charming e-mail from the head of an organization I had not heard of, the Lymphoma Research Foundation of America (LRFA). The writer, Ellen Cohen, was an indolent NHL survivor and TV producer. LRFA was trying to leverage the Internet to spread the word about the Foundation and fundraising. Through correspondance, I quickly determined that Ellen was no fly by night fundraiser but a person truly dedicated to helping lymphoma patients and getting funding to the researchers who could find cures.

I was able to meet Ellen, along with some others in the lymphoma fight, in Los Angeles in 1995 during a LRFA sponsored patient education program. I showed her my website and she asked if I could build one for LRFA. I generated a rudimentary one in a day and went on to build their first full fledged site. The Internet had indeed helped get the word out.

Ellen passed away August 2000 from an infection following a BMT. I'm sad as I had just moved back from Finland.

LRFA merged with Cure for Lymphoma (CFL) to form the Lymphoma Research Foundation (LRF) not long after that, and the rest is history. While I still maintain loose ties to LRF, it's never been quite the same.

More on Ellen, an article from the BMT Newsletter, and Google