clustera on Jan 20th 2010
Here are some of the stories about why we became involved in disease cluster advocacy.
I was born in Los Angeles, California March 13, 1950. I am single with two children: Jim Walls and Trevor Smith. I lived most of my life in San Diego, California. We live in McCall, Idaho now.
My youngest son Trevor was diagnosed with brain cancer in 2002. That experience prompted my involvement in childhood cancer prevention and awareness. I have been involved in strategic planning as a member of the Comprehensive Cancer Alliance for Idaho. I was also involved in conference planning for the alliance addressing childhood cancer for the Summit Conference in May of 2007. I will continue to be active in the cancer alliance and I am spearheading a strategic plan with a committee to address childhood cancer in Idaho. I am also on the St. Lukes Health Foundation Board and I am active in Idaho Downwinders. In my spare time I enjoy golfing, interior decorating, and spending time with my children.
(Special to NDCA our Youth Ambassador and 5 year cancer survivor)
My name is Trevor Schaefer, I am an 18 year old senior at Boise High School. I was born in San Diego, California October 19, 1989. When I was six years old I moved with my mother and father to McCall, Idaho. When I was 13 years old I was diagnosed with brain cancer. My mother and I moved to Boise where I could receive medical care. During the course of my chemotherapy treatment I witnessed many children who were experiencing cancer. This motivated me to want to find out what was causing so much of this disease in young people.
I am very concerned about environmental toxins and how it relates to cancer and other diseases. I am an avid golfer and enjoy snowboarding. In my spare time I volunteer with Make A Wish Foundation of Idaho, the Comprehensive Cancer Alliance for Idaho (childhood cancer panel), and Idahoans for Clean Water Coalition. I have become active in childhood cancer awareness and have formed a website and organization: Trevorstrek.com which is a awareness campaign and fund raising event I created with the theme of “Walk a mile in our shoes” I also am Vice Chair of the Alliance Committee for National Disease Clusters Alliance.
I wasn’t paying any attention to environmental health until my younger son Linus was diagnosed with leukemia in 2001. His oncologists said that the cause of childhood leukemia was unknown and they had no ideas on protective measures I could take to avoid relapse. The Sierra Vista AZ childhood leukemia cluster started making headlines and staff at my son’s hospital were nervous talking about it. Another mother with a child with leukemia, Tricia Olma, told me that she was trying to get researchers to investigate but that no one was willing and everyone suggested she should stop asking as she was making other parents nervous. I felt that investigation was reasonable and that if she couldn’t get taken seriously on her own that perhaps we would have better luck as a group. We formed Families Against Cancer & Toxics, started having regular meetings, and started a website. We did succeed in getting AZ cancer registry staff to check if the rate of leukemia in Sierra Vista was higher than the rate of leukemia in other parts of Arizona. The rate of childhood leukemia was found to be statistically significantly higher, and the Centers for Disease Control got involved. They had overturned their decades-long policy to ignore cancer clusters because of the extremely high incidence rate of childhood leukemia in Fallon, NV. The CDC conducted a health study and included biomonitoring to measure the levels of toxic chemicals in the bodies of children with disease. FACT held a conference on cancer clusters and was joined by advocates for better research into causation and prevention of cancer and other chronic diseases.
After a few years there was a public meeting in which CDC came back to report their findings. CDC said that there was an interesting genetic pattern with all case families and most controls having the SUOX gene, but that otherwise they were mystified about the cause of the leukemia. They considered the contaminants measured in the children to be “normal.” In my son the CDC found arsenic, barium, cesium, cobalt, lead, manganese, molybdenum, thallium, tungsten, uranium, DDE, Dieldrin, oxychlordane, transnonachlor, dimethyldithiophosphate, diethylthiophosphate, diethylthiophosphate, 16 kinds of PCBs, benzene, ethylbenzene, xylene and styrene, none of which meets my idea of “normal.”
Along the way I have been astonished again and again that health precautions I assumed were in place are non-existent. Learning about the lack of environmental regulations, the obstacles to pollution prevention, the shenanigans of polluting industries, all made me lose faith that society was coping with environmental exposures. I left a job I loved with the public library to become an activist for environmental health. And I returned to school and got a Masters in Public Health with a focus on Environmental and Occupational Health, completed in May 2010. After receiving the degree I was very pleased to be hired as Executive Director of NDCA, an organization I have been cheering for ever since its founding. Most of my classmates could only find work within industry, so I am counting my blessings and looking forward to spending my remaining work years as part of the important fight for a safe environment for all of us.
I met Dee Lewis, NDCA’s founder, in my hiking group. I was interested to learn about her work fighting contaminants in the drinking water in Sacramento, California. Through Dee I learned about environmental justice and the unequal burden of exposure facing communities of color or low socio-economic status. Dee introduced me to Floyd Sands of Fallon, NV, and I offered to help him on a lawsuit against Kennemetals, which is ongoing. I am a strong believer in the importance of NDCA’s mission and I am glad to serve on the board of directors.
I heard Dee Lewis present about disease clusters at a conference and a week later I read in my hometown newspaper of a possible cluster associated with TCE in the water in Victor, New York. I called Dee for advice and she flew to New York with me to meet with health officials, community members and other stakeholders. The community followed all of NDCA’s recommendations in their response to the crisis. I was so impressed with Dee’s graciousness and the importance of the help she gave that I agreed to join the NDCA even though I am very busy running another nonprofit, the National Center for Healthy Housing. I am pleased to see NDCA moving from an all-volunteer organization to having paid staff, and I have high hopes for our accomplishments to come.
Frank Bove, ScD
I have been (and still am!) involved in anti-war, social justice and
environmental issues for over 40 years. Currently I am on the board of
Environmental Community Action (ECO-Action), a grassroots environmental organization in GA. My interest in science issues, particularly
environmental exposures and cancers, began when I worked for Science for
the People from mid-1975 to early 1977. (Science for the People
published a bimonthly magazine during the 1970s and 1980s as well as
organized around various social justice and science issues.) By early
1977, I became involved with the Clamshell Alliance in New England, a
grassroots anti-nuclear power, pro-renewable energy. On May 1, 1977, I
along with over 1,400 others were arrested for occupying the Seabrook NH
nuclear power plant site and spent almost two weeks in the Manchester NH
armory. From September 1977 to September 1978, I was on staff at the
Boston office of the Clamshell Alliance and then worked for a year with
the Massachusetts Public Interest Research Group (PIRG) on energy and
hazardous waste issues. From early 1980 until I entered public health
school in the fall of 1982, I worked as an organizer on issues such as
welfare rights, utility shutoffs, low-income home energy assistance, and
public housing. I became interested in disease clusters when I learned
about the Woburn childhood leukemia cluster in my first year as a public
health school student. I had a part-time job at the school interviewing
community activists in towns across Massachusetts who were dealing with
hazardous waste sites in their communities. My project was to determine
how well the federal and state agencies were serving the needs of these
communities. Of course, the unanimous verdict of all the community
activists I interviewed was that they were being poorly served! During
the project I learned about the Woburn cluster. During my years at
ATSDR, I have worked on several cluster investigations including the
Fallon, NV childhood leukemia cluster and the Brick Township, NJ autism
cluster. Work on the Brick Township autism cluster was especially
important to me because two of my three children, my daughter Leah born
in 1987, and my son Victor born in 1990 have autism. Working on cluster
investigations has been exciting, inspiring but disappointing as well.
I am frustrated when a cluster investigation ends in failure. However,
I have learned from my experiences and I think there are ways to
minimize failures in future investigations. A key element is for
researchers to work in close and equal partnership with the members of
the community where the cluster has occurred.
Written by Floyd Sands. Posted 3/8/2008.
My daughter Stephanie Suzanne Sands was diagnosed with Acute Lymphocytic Leukemia- T cell in mid-July 1999. I would later learn that Stephanie’s was the 2nd case diagnosed as attributable to the Fallon, Nevada Childhood Leukemia Cluster.
In early June 2001 I again found myself traveling to the University of Pennsylvania Medical Center at Philadelphia to spend the day with Steph; she had undergone an UCB stem cell transplant there on May 23rd 2001. Although the transplant had gone very well with engraftment beginning soon after the procedure, Steph remained hospitalized. During my drive to Philadelphia I struggled to find the words that I had to speak to Stephanie that morning, that young Adam Jernee of Fallon who also battled ALL T-cell, had died the previous day in a hospital in Southern California.
Stephanie and I spent perhaps our first hour together that morning in idle chitchat and with Steph good naturedly complaining about hospital food and that sort of thing. She complained bitterly of how badly she missed her son. She could tell that something was bothering me and I could not delay the inevitable any longer.
There are no good words by which to deliver bad news and as gently as I could I told Steph of Adam’s passing. Stephanie turned away in silence and remained sullen and detached for what seemed like an eternity. After a while Steph turned back to me and asked me how old Adam was; I told her that Adam was 9 years old. Steph’s eyes filled with tears and slowly those tears were replaced with anger.
“Daddy, they’re just little kids. They didn’t do anything wrong……Why won’t those bastards help us?”.
Stephanie Suzanne Sands died in my arms on September 1st 2001 at the age of 21. She left behind an adoring 3 year old son, Ewan Mikel Sands, and a heartbroken family.
By her own words Stephanie planted the seeds of my activism that June day; her death lit a fire within me.
CDC’s Fallon childhood leukemia cluster study is it’s 109th consecutive failure at cancer cluster study. If CDC were a horse, it would have been put down decades ago.
OTHER COMMUNITIES, SAME STORY
In 2002 Dee Lewis and community activists in
Also in 2002 Terry Norbrock of
In 2002 Paul Spracklen, father of a daughter fighting AML at NAVMEDCTR-San Diego bumped in to a woman there who seemed familiar to him. During a brief conversation Paul and this woman realized that they had been neighbors living in base housing while stationed at
In 2003 concerned parents of children diagnosed with ALL and living in
More recently the story of the struggle of Trevor Smith formerly of
Most recently Michael Barry and concerned residents of
The list goes on and on and on. The stories remain the same, only the names and faces change.
These communities share one common theme; they have all been neglected and abused and ignored by Public Health.
DO SOMETHING, DO ANYTHING
In the months following Stephanie’s death I continued to receive many reports and rumors of rare cancers striking my friends and former neighbors living in
In AUG2002 along with another Fallon leukemia family I appeared on the Phil Donahue Show live on MSNBC. A representative of the Nevada State Health Division appeared via satellite; he had refused MSNBC’s request to appear in person and at no cost to the State of
In SEP2002 after consulting with friends and researchers I decided to conduct a volunteer health survey of
In the PR build up to the health survey the local media in
The evening before I traveled to Fallon to do the health survey in OCT2002 my phone rang. Calling was Dee Lewis of
Early that first Wednesday afternoon of Stephanie’s Walk, Dee Lewis and an associate walked into the war room at my hotel in Fallon.
THE BIRTH OF NDCA- THE NATIONAL DISEASE CLUSTER
Many months following our respective health surveys, Dee and I once again found ourselves on the phone together sharing war stories and complaining about the sorry state of Public Health. We each had spent of lot of time commiserating with others around our country who had experiences identical to ours. Our experiences had taught us that there had to be a better way. Our experiences had taught us that failure is never success. Our experiences had taught us that Public Health has never truly tried to aid impacted communities and in fact intentionally takes advantage of those impacted and suffering communities.
It was a watershed moment as
Over the course of the next year or so Dee and I gathered together with many people whom we had come into contact with over the years. Many of our new partners were folks whom we might otherwise have found ourselves in adversarial relationships with. We joined with people from Public Health who had the “skill and the will” to make change happen. We joined with Dick Clapp, Dan Wartenburg, Frank Bove, Paul English, Amy Kyle and others from the world of Public Health. We joined with parent and community health activists who suffered at the hand of Public Health. We joined with Agnes Reynolds, Jill McElheney, Terry Nordbrock, Paul Spracklen and others from suffering communities. We joined with other activist and community based organizations around our country. We joined with some of the finest minds in Science. We joined with Mark Witten, PhD of the
We all are from very different backgrounds and areas of expertise, yet we are all much the same in one very important way. We all have the skill and the will, the focus and the desire to reach across the table for the common good. We all have the passion and the desire to drive change.
WHAT NDCA DOES
We reach out to, mentor and advise communities experiencing emerging disease clusters and those suffering toxic assaults. We work with impacted communities to become self-determining and self-empowered. We respond to each and every community which seeks our help.
We bridge gaps between historical adversaries and grow our alliances to benefit impacted communities.
We only accept success; failure is never an option.
We do what we do, because no one else will.
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