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Today is such a sad day, on May 29, 2009 our dear friend and founding member, Floyd Sands, of National Disease Clusters Alliance passed away. After an arduous battle with cancer he was surrounded by his son Jason and daughter Sierra, who he loved so much. He was back in his hometown of Tunkhannock, Pennsylvania.

We will all miss his compassionate loving genuine and honest nature. He was an inspiration, given his unwavering desire, passion and commitment. He sought and fought for truth, justice hope and empowerment for members of disease cluster impacted communities. As a crusader in this work he made a profound difference for people. He was a person of high morals and integrity, direct and downright blunt sometimes-he was sure a character and we all loved him dearly.

Below is a vision statement Floyd created in early 2008, chronicling his life’s work following the passing of his beloved daughter Stephanie. Please forward to any and all friends.

During my daughter Stephanie’s 26 month struggle with leukemia one of the hardest things for me to deal with personally was the realization that I was utterly powerless to help her in many ways. Parents of Children fighting cancer are only able to provide love, comfort, reassurance and support; we are not able to bring about a cure for our Child, nor are we able to relieve their suffering. We are seldom able to answer their questions or to quell their fears. Children perceive their parents as being able to fix anything, to sooth any hurt, to always be able to make everything right. Children perceive their parents as nearly god-like. Yet when our Child is struck down by cancer we realize how powerless, how impotent, how completely unable to help our Child we really are.

It is much the same for a community experiencing a disease cluster.

A year and a half into Stephanie’s struggle I learned of the Fallon Childhood Leukemia Cluster and Stephanie’s case was soon included. As time wore on I watched and worked with the Nevada State Health Division, US CDC/ATSDR, state and local governmental agencies, and others as they conducted their various studies, public meetings, PR events, news releases and public utterances. At the beginning I believed that a genuine scientific study of the Fallon cluster had been undertaken, that our governmental agencies were “on the ball” in doing the right things at the right times and for the right reasons. I had always believed that our government truly served the People. Little by little and over time, and through a long series of events I began to doubt the official efforts being made in Fallon. I began to pay much closer attention.

It became evident through a great number of conflicting official statements, position reversals, cleverly punctuated reports, and blatant collaboration with Fallon’s business and industrial interests that not all was as we had been made to believe as concerns the investigation into the Fallon Childhood Leukemia Cluster. I witnessed the statements and actions of the Nevada State Health Division, US CDC/ATSDR and others as they slowly drove a wedge between the community and the Fallon leukemia Families. I watched as these agencies methodically and slowly isolated the Fallon leukemia Families from their own neighbors and supporters. I witnessed these agencies gradually desensitize, then de-humanize and then finally demonize the Fallon leukemia Children and their Families. I watched as these agencies marginalized then trivialized our Children and our Families. I watched as these agencies announced their utter failure in determining causes and contributors to the Fallon cluster. I watched as these agencies fairly reveled in their failure. I watched as the Fallon Childhood Leukemia Cluster became these agencies’ 109^th consecutive failure at cancer cluster investigation, and just as they had foretold.

I became outraged, yet I remained silent. I was silent because I did not know from where help for Steph may come. I was silent because of my time spent in hospitals. I was silent because I feared the power of our government. I was silent because I was afraid to rock the boat. I was silent because I feared Public opinion.

From my silence grew shame. Shame because I had not posed the questions, shame because I had not overcome my fears, shame because I had allowed myself to be lied to and lied about, shame because I had not stood my ground and demanded Truth.

The official investigation into the Fallon childhood leukemia cluster stands as the most powerful example of how not to conduct a cancer cluster investigation. A college instructor in California uses the example of the Fallon childhood leukemia cluster investigation as course material on how not to succeed at determining the causes and contributors of disease clusters.

It is my dream and my personal vision that I help communities facing emerging disease clusters.

It is my dream and my personal vision to contribute to those communities’ efforts to become empowered, to become self determining, to take their futures into their own hands, and to mentor those communities as they seek answers to the problems which they face.

It is my dream and my personal vision to travel to these communities and to work with them in their daily struggles.

It is my dream and my personal vision to help develop and build a new way of thinking and a new way of studying emerging disease clusters, to access and share the tools and resources necessary to build bridges between communities, governmental agencies and the Future.

It is my dream and my personal vision that no community ever endures what Fallon, Nevada and our Children endured, and lost.

Floyd Sands 2008