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Suzanne Fleischman died on February 2, 2000 after a long battle with MDS. As a spokesperson for the MDS patient community she shared her hard-won knowledge of this disease with patients worldwide.

Dr. John Bennett noted that "Suzanne's untimely death highlights many of the unresolved issues concerning the management of patients with MDS. She was our first patient advocate and delivered the most eloquent and meaningful address at the last MDS symposium in Prague of all the hundreds of talks presented."

In her own words Suzanne said she attempted "....to communicate to the clinicians and researchers to whom we are beholden and on whom our lives depend, issues that are of concern to us by virtue of the fact that we live with a chronic illness; that most of us have little hope for a cure and face the prospect of inevitable decline; that our diseases are rare and unfamiliar to the population at large "before the advent of Internet technology, few of us knew anyone else who had been diagnosed with MDS...." *

Her last posting on January 19, 2000 to the MDS community of patients on the Internet was typical of Suzanne-- "Know how much it means to me and how gratified I feel knowing that you all have benefitted from whatever I could pass along and share with you to make your lives a little better."

She will be missed.

* Fifth International Symposium on Myelodysplastic Syndromes, Prague, Czech Republic April 1999

Suzanne Fleischman Memorial Fund for Patient Advocacy

A fund has been established by the Myelodys-plastic Syndromes Foundation in memory of Suzanne Fleischman. Donations to this fund will be deposited into a separate account and utilized to provide patient education conferences at the Foundation's Centers of Excellence, to help patients who can't afford care, and to provide Suzanne's writings in booklet form to patients and families. The fund was established with an initial donation of $500 from Foundation. Contributions may be sent to the Foundation with a notation designating the Suzanne Fleischman Memorial Fund for Patient Advocacy.

New donations have been made to the Suzanne Fleischman Memorial Fund in 2005 by Roslyn Raney, Menlo Park, CA and Fay Wanetick, Pittsburgh, PA.
Donations in 2004 were made by Edward Fleischman of Prescott, AZ, Roslyn Raney of Menlo Park, CA and Fay Wanetick of Pittsburgh, PA.
Donations in 2005 were made by Edward Fleischman of Prescott, AZ and Daniel and Sandra Linn, La Jolla, CA.

The MDS Foundation Mourns the Loss of Patient Advocate Rex Birch

When Rex Birch called The MDS Foundation over two years ago regarding his internet open letter on patient views, no one anticipated the impact his contribution would have on the MDS patient community. Mr Birch's write-up is direct, yet somehow light-hearted. His message translates "medicalese" into plain language, and has become a source of comfort and clarity for many people affected by the disease. Callers to The MDS Foundation, having had the benefit of previewing Mr. Birch's web site, consistently convey relief. This relief is usually communicated as a reflection of feeling better informed and sometimes, a feeling of having confronted the worst of fears.

Rex Birch's son, Ian Birch has continued to maintain the web page initiated by his father. The page can be viewed at www.ibirch.pwp.blueyonder.co.uk. Ian Birch says his father was living proof of the importance of the relationship between mind and body. He says his father's positive attitude contributed to his longevity, relative to his diagnosis of Refractory Anemia with Excess Blasts. He says he believes optimism kept his father going longer than the prognostics indicated.

The MDS Foundation shares the sorrow of the patient community regarding the untimely loss of Rex Birch. He has made an extraordinary contribution to the patient world of MDS, and he will be sorely missed.