Studies Underway on Prevalence of ALS Near Hazardous Waste Sites in Five States

People with ALS encouraged to identify themselves in study areas


CALABASAS HILLS, Calif., Aug. 3, 2004 (PRIMEZONE) -- Responding to community concerns, the Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, is funding an environmental health program to determine the prevalence of amyotrophic lateral sclerosis (ALS) disease in areas surrounding hazardous waste sites in five states.

The neurodegenerative disease, commonly referred to as Lou Gehrig's disease, attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy. Patients usually survive between two and five years from the time of diagnosis.

Researchers are focusing on communities near hazardous waste sites in Illinois, Massachusetts, Missouri, Texas and Washington. Separate studies also are ongoing to determine the prevalence of multiple sclerosis (MS) in Missouri, Illinois, Texas, Washington, Massachusetts and Ohio.

The ALS Association (ALSA) and its network of chapters is providing assistance in these studies through the coordination of efforts to identify people with ALS in the study areas. In most cases, patients are being identified through their neurologists.

"Finding potential links between ALS and the environment is important for a better understanding of the disease," said Mary Lyon, vice president of patient services for ALSA. "The ALS Association is putting its efforts into working with ATSDR and local investigators to raise awareness and identify people with ALS for these studies."

For several years, ALSA has been working closely with ATSDR, a sister agency of the Centers for Disease Control and Prevention (CDC), and CDC on strategies to develop ALS prevalence estimates and reporting procedures as well as on techniques for disease surveillance to achieve improved understanding of the incidence and pathogenesis of ALS.

"Studies of ALS incidence and prevalence in areas of hazardous waste, when conducted in parallel with similarly detailed studies in areas without such waste, may help determine what type of environmental factors contribute to the development of ALS," said Carmel Armon, M.D., chair of a scientific advisory committee established by ALSA regarding the ALS Kelly Air Force Base study. Armon is chief of the Division of Neurology at Baystate Medical Center in Massachusetts.

"If increased incidence is identified in specific regions," Armon continued, "it may provide an estimate to the magnitude of the external environmental impact, and focus research on toxic substances specific to those areas and the mechanisms by which they might induce ALS. If no increased incidence is identified, it will serve as reassurance to the communities in question, and may refocus research away from futile directions. Consequently, I support well-designed studies such as those conducted by ATSDR, and hope to see more of them."

ATSDR is working with an array of public health agencies, health care associations and physicians to develop data to estimate the prevalence of ALS in these study areas. The prevalence reports, which will be issued in 2005, will serve as the basis for possible future ATSDR studies of potential environmental risk factors.

"These communities are concerned about hazardous waste in their area and about Lou Gehrig's disease and MS," said Dhelia Williamson, epidemiologist for ATSDR and project officer for the study. "We will answer the question about how many people have ALS and MS in these areas."

The ALS prevalence research is ongoing in the following areas:



  --  Illinois - Five communities near hazardous waste sites that
      contain metals, fertilizers and fuels.  Patients should
      contact Barb Sjostrom, project coordinator, University
      of Illinois at 800-854-4461 or barbsjos@uic.edu.

  --  Massachusetts - A 30-community area in southeastern
      Massachusetts.  Patients should contact Rick Arrowood at
      ALSA's Massachusetts Chapter (800-287-3257 or
      rick.arrowood@als-ma.org) or Jan Sullivan, project
      director, Massachusetts Department of Public Health
      (1-617-624-5757 or Jan.Sullivan@state.ma.us).

  --  Missouri - Communities surrounding a lead smelter in
      Herculaneum in Jefferson County.  Patients should contact
      Sharon Gacki at ALSA's St. Louis Regional Chapter
      (1-314-534-0610 ext. 26 or mriggs@alsastl.org) or George Turabelidze,
      Missouri Department of Health and Senior Services
      (1-314-877-2826 or turabg@dhss.mo.gov).

  --  Texas - Studies are focusing in the El Paso and San Antonio
      areas and in north Texas.  Patients should contact Mary Klenke
      at ALSA's South Texas Chapter (1- 877-257-4673 or
      mlkgklenke@aol.com) or Laurie Wagner, Texas Department of
      Health (1-512-458-7269 or Laurie.Wagner@tdh.state.tx.us).

  --  Washington - Studies near the Hanford Nuclear Reservation
      to determine prevalence in three eastern Washington counties.
      Patients should contact Mary Renn-Weiner at ALSA's Evergreen
      Chapter (1-877-379-7593 or maryrennpsc@alsa-ec.org) or
      Bill Lambert, Oregon Health & Science University,
      (1-503-494-9488 or lambertw@ohsu.edu).

For additional information on ATSDR's ALS and MS projects, contact Dhelia Williamson, ATSDR, at (888) 422-8737 ext 0585 or djw8@cdc.gov.

The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to the fight against ALS. For more information, contact ALSA at 818-880-9007 or visit the association's Web site at www.alsa.org.

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