If you missed the event in Tucson you are in luck because you can watch a video of the presentations:

“Poisoned for Profit” video (60 minutes)

Keynote speaker Alice Shabecoff is a New York Times journalist and renowned author who discussed her book “Poisoned for Profit.” Her presentation made a strong case about the immediate need for reform and she invited the audience to join the movement for a safer world for children.

NDCA’s Executive Director Terry Nordbrock, MPH, discussed the Sierra Vista AZ childhood leukemia cluster, widespread frustration regarding disease cluster response, Toxic Substance Control Act (TSCA) reform, and the need to shift the burden of proof onto industry that chemicals are safe before they are sold.

Pediatric Toxicologist Mark Witten, PhD, talked about his research on the effects of tungsten exposure in mice –they developed leukemia –and the need to limit exposure to tungsten.

Dendrochronologist Paul Sheppard, PhD, described how scientists can be oppressed by the legal process.

Childhood brain cancer survivor Trevor Schaefer had people crying then laughing. He talked about travelling to D.C. to meet with Senator Barbara Boxer and EPA Director Lisa Jackson about the need for better disease cluster identification and response.

NDCA is delighted to announce the hiring of new Executive Director Terry Nordbrock, MLS, MPH. Terry brings with her seven years of environmental health activism and a wealth of resources to this position.

Terry completed a Masters in Public Health degree at the University of Arizona Mel and Enid Zuckerman College of Public Health, with a focus on Environmental and Occupational Health.

Terry became concerned about environmental health when her two-year-old son was diagnosed with leukemia. In 2003, Terry and several other mothers of children with cancer met to discuss their frustrations about the Sierra Vista childhood leukemia cluster, and agreed to form a group to encourage more investigation into the cluster, Families Against Cancer & Toxics (FACT). CDC overturned their decades old policy of non-involvement in cancer cluster investigations to respond to the childhood leukemia clusters in Fallon, Nevada and Sierra Vista, Arizona. Terry gave up a beloved career as a reference librarian to work full-time to improve environmental health.

In 2004, FACT held a weekend conference for people affected by disease clusters. Advocates came to Sierra Vista from across the country from places like Fallon, NV; LeJeune, NC; and Sacramento, CA to explore ways of working collectively to address shortfalls in the nation’s public health system.

Please join us in welcoming Terry to this position.

 Advocates Call for Swift Action in Response to Community
Concerns of Disease Clusters

         October 30, 2008 – San Diego, California – Former U.S. Surgeon
General, Dr. Joycelyn Elders joined activists last night in kicking off
a campaign geared toward raising awareness and more effective response
to disease clusters in the country. Matt Wilhelm of the San Diego
Chargers and his wife, Vanessa as well as Steve Altman, President of
Qualcomm and his wife Lisa joined and aided the organization to raise
more than $25,000 towards this vital and emerging cause.

         A “disease cluster” is an unexpectedly large number of cases of
the same or similar diseases in a geographic area over a defined period
of time. The environment plays an important role in human development
and health. All populations are not created equal when it comes to
their ability to withstand environmental insults without serious health
consequences. It is well documented that exposure to toxic chemicals
can have a devastating impact on the fetus or on infants during
developmental “windows of vulnerability” when cells are dividing
rapidly.

         The campaign, “No Disease Clusters Anymore,” was spearheaded by
the nonprofit organization, the National Disease Clusters Alliance.

         Other speakers included Trevor Smith, a youth advocate for NDCA
and brain cancer survivor; and Dee Lewis, Executive Director of NDCA who
led the battle to uncover the environmental causes of the disease
cluster in the Calvine-Florin community in Sacramento.

         According to Lewis, “government resources, capacity, protocols,
and methodology have all been found inadequate for assisting
communities that are confronting a known or suspected
environmentally-related disease cluster.”

         Every year, residents request investigations into more than
1,000 suspected cancer clusters.  In 2002, a suspected cluster was
identified outside of San Diego. Valley Center residents have
documented 14 cases of childhood cancer between 1997 and 2002. Parents
believed there may be a link in the cases, with most of the children
affected living in the same general area.

According to Trevor Smith, NDCA Youth Ambassador (former San Diego
resident) of the McCall, Idaho suspected cancer cluster,” Cancer is
like a pebble dropped into still water – the effect ripples through
your life, your family, and your community.”

About NDCA

NDCA promotes vibrant, healthy communities through empowerment and
supportive partnerships. NDCA was formed out of the urgent need to
identify and respond to emerging disease clusters. NDCA is comprised of
agency, staff, nonprofit organizations, community activists,
scientists, and academia.

Activists form alliance to fight cancer clusters

Frank X. Mullen (FMULLEN@RGJ.COM)
RENO GAZETTE-JOURNAL
August 13, 2007

When a cancer cluster is detected in a community, parents are alarmed, government agencies are skeptical, fear stalks the streets and residents start to worry about property values.

“We read about this happening in Fallon and in other places, and now it’s happening to us,” said Michael Barry of Victor, N.Y., where a toxic solvent plume extends beneath dozens of homes and 16 people have died of a cancer that a citizens’ group believes is linked to the toxin.

“But we have help. The National Disease Cluster Alliance brings a lot of expertise and perspective to what’s happening here. There’s a lot of resistance on the part of town and state governments to face what’s happening. The alliance is helping people understand and get moving,” Barry said.

The National Disease Cluster Alliance was born in the Fallon leukemia epidemic, which has sickened 17 children and killed three since 1997, and in a suspected cancer cluster in Sacramento. The parents of cancer patients, health activists and scientists who have investigated other clusters make up the board of directors.

The alliance is developing a rapid-response team that can be sent to towns that are about to be swept up in the anguish, politics, conflict and uncertainty that accompanies a cancer cluster.

Floyd Sands, a former Fallon resident whose daughter, Stephanie, died of leukemia in 2001, and Dee Lewis, who organized a citizens group in Sacramento in 2002, are founding members of the NDCA. The two parents organized cancer incidence surveys in their communities in 2002 when they became dissatisfied with government responses.

Experts at the time said the surveys were unscientific, but noted that the results were compelling because they documented more rare cancers than common cancers in both communities. Suspected environmental causes of the Fallon cluster are still being investigated, and the solvent triclorethene was found in the water in Lewis’ community. That solvent, also called TCE, is the chemical in the Victor, N.Y., plume.

“What happened in Fallon is heartbreaking,” Lewis said. “And what made it more heartbreaking was the dog-and-pony shows put on by the local, state and federal governments and the infighting in the community.

“Those things disempower a community. We found out that you can’t depend on the government. … There have to be new protocols of response to deal with (clusters) instead of allowing the same things to happen over and over and winding up with a divided community.”

Lewis visited Victor, N.Y., last week and has lobbied for a national measure, introduced into the Senate by U.S. Sen. Hillary Clinton, D-N.Y., which would require the Environmental Protection Agency to quickly respond to TCE contamination sites in neighborhoods.

Lewis, Sands and other alliance members, including epidemiologists, plan to help Victor residents conduct a cancer incidence survey and take other stops to help residents cope with the health threat.

“If we’re invited, we’re willing to mentor a community and work with the residents,” Sands said. “We won’t tell them what to do because people from Nevada or California or Pennsylvania can’t tell people from New York or elsewhere what to do in their own backyards. But we can tell them what we’ve been through and show them what we’ve learned.

“We hope to make a community toolbox available for dealing with clusters or suspected clusters so residents don’t have to keep reinventing the wheel.”

Those tools include procedures for door-to-door cancer surveys, advice about media and government relations, fundraising tips and other lessons learned from cancer clusters in Fallon, Sacramento, Sierra Vista, Ariz., and elsewhere. Scientists, including Dr. Mark Witten, a toxicologist from the University of Arizona, are part of the alliance.

Barry said Victor, N.Y., residents concerned about the TCE plume and the high incidence of cancer welcome the help of people who have been through such epidemics elsewhere.

Sometimes opposition gets rough, he said, as when he was called a terrorist by people who are worried about their property values. He said he understands people’s frustrations, but said children’s health trumps economics.

“I care about our community and addressing the health threat, the cancer cluster and its root cause,” Barry said. “It’s a highly political situation. Nobody wants to come to terms with what the environmental problem is and what it will take to fix it.”

“I care more about our community health than our community image,” Barry said. “But like the parents in Fallon and in other places, we’re meeting this head-on. That can only add to the image of this town’s integrity.”