Barbara Lackritz, mother of three adult children, had worked as a speech pathologist for 30 years when she was diagnosed with B-cell chronic lymphocytic leukemia (CLL) in 1989. She was an information gatherer from the day of diagnosis and dove into research both in print and online. She used to say, "I tell doctors that people like me can be their strongest ally or their worst nightmare. Since I pick my doctors carefully, I have had some wonderful allies."

Barbara Lackritz's disease did not follow the typical indolent course. Within two years, her white counts had reached 100,000, her lymphocytes were 99%, and her red cell counts were low. Her lymph nodes swelled, and she started having night sweats. After more research, she started on fludarabine. Six courses later, she was in remission.

While Barbara was watching her counts rise and researching the disease and treatment options, she promised herself that no patient with her disease would ever have to endure the horror of feeling alone if she could prevent it. Barbara, known as GrannyBarb on the Internet, started a web page for others with CLL and was a regular participant on CANCER-L, one of the first listservs hosted by ACOR (Association of Cancer Online Resources).

As her website grew, she found another leukemia site built by Art Flatau, an AML survivor. Barbara and Art decided to combine their sites. They then build and run the world-famous leukemia site known as "GrannyBarb and Art's Leukemia Links." This huge, accurate, and user-friendly site was designed to describe the various adult leukemias and contained information on treatment options, genetic information, links to the best sites on the Web, a site map, and Barb's and Art's personal stories. Art & Barb shared a deep friendship and a passion for accurate information. Barb said, "Art is phenomenal. We constantly communicate and tend to see things the same way. In all these years, we've never had an argument."

While Barb continued to help people with CLL feel less alone, her own cancer returned in 1994. This time, the cancer had spread to her lungs and sinuses. She went on fludarabine and cytoxan and researched transplant options. Meanwhile, the growth of online discussion groups exploded. CANCER-L and HEM-ONC divided into dozens of cancer-specific groups. The numbers of people with cancer who communicated through ACOR swelled into the tens of thousands. Barb administered several of the lists including CLL and HEM-ONC. She answered thousands of email questions and talked on the phone to innumerable people with cancer.

In 1996, Barb chose to have a peripheral blood stem cell transplant at M.D. Anderson Cancer Center in Houston. Her insurance company, however, refused to pay for it. While the battle over payment raged, Barb went to Dana-Farber Cancer Institute in Boston for a second opinion. When she arrived, the oncologist had spoken with one of his colleagues who was a member of HEM-ONC, and had taken the time to download and read "GrannyBarb's Story" at the leukemia links site. Their initial conversation lasted three hours, and Barb remarked, "I felt I had found a doctor whom I could trust to answer my questions honestly and who deeply cared about his patients. He answered all of my questions, and I was more comfortable with the proposed program than I could have believed." After serious bouts with pneumonia and more chemo to get the cancer into remission again, Barb had an autologous bone marrow transplant at Dana-Farber in June 1997.

During her hospitalization, her online friends rallied around. Those who lived in Boston brought food, jokes, and a laptop and provided free local Internet access. People whom Barb had known on the Internet for years came by to visit in person. Online friends sent hundreds of cards and good wishes. Despite some post-BMT side effects, Barb recovered with the love and support of her family and friends.

Barb continued to make good on her promise. The ACOR CLL list she administered until her death now has over 2,350 members. Barb and Flatau continually updated and improved the Leukemia Links site. Barb was one of the original members of the board of directors and of the Executive Committee of ACOR and a member of the board of the CLL Foundation. In March 1999, she was appointed to the National Institutes of Health Director's Council of Public Representatives (COPR).In 2001, she completed a book on adult leukemia published by O'Reilly & Associates, Inc.'s Patient-Centered Guides. You can read her reasons for writing this great paper guide.

Sadly Grannybarb's disease relapsed again and she passed away in June 2003. Art has been working hard to maintain the site for the last year. ACOR believes that the site is so important that we obtained an educational grant from Berlex Laboratories to revitalize the look and feel of the site and manage the content. In the process we collectively decided to rename the site "ACOR's Leukemia Links".

This site is made possible by an educational grant from Berlex Laboratories.