ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, July 8, 2009

Let's Get ALS On Their Radar - Nominate!

Surely someone with an intimate knowledge of ALS can get a seat at this table.  By the way, ATSDR is the arm of the CDC responsible for delivering the ALS Registry.  


RESOLVE, a non-profit organization specializing in consensus building in public decision making, and CDC’s National Center for Environmental Health and the Agency for Toxic Substances and Disease Registry (NCEH/ATSDR) are accepting nominations for membership in each of the National Conversation on Public Health and Chemical Exposures’ six work groups. The work groups are:

Work Group

Chair

Monitoring: collecting information on chemical use, exposure pathways, exposure levels, and health outcomes

John Balbus, George Washington University

Scientific Understanding: filling knowledge gaps on the health effects of chemicals

Kevin Teichman, Environmental Protection Agency, Office of Research and Development

Policies and Practices: reducing harmful chemical exposures and adverse health outcomes, eliminating inequities, and spurring the development and use of safer alternatives

TBD

Chemical Emergencies: preventing, preparing for, and responding to acute chemical incidents

Andrea Kidd Taylor, Morgan State University

Serving Communities: addressing local chemical exposure concerns to promote environmental justice and improve health

Peggy Shepard, WE ACT for Environmental Justice

Education and Communication: ensuring a well-informed public and a competent network of health care providers

Kathy Rest, Union of Concerned Scientists

 

What will work groups do?

Work groups will be responsible for addressing the following questions:
  • What are the major components of the United States' approach in this area?
  • What have been the major successes in this area over the last 40 years?
  • What are the major shortcomings, gaps, redundancies, and emerging priorities?
  • What solutions could help improve the system?
  • What can be done quickly (1-2 years)?
  • What recent or ongoing initiatives might impact this area?
  • Which parties can take specific actions?


As a product of their analyses, each work group will develop recommendations focusing on the role of NCEH/ATSDR and other federal agencies, while also addressing the role of non-federal partners (state and local agencies, non-governmental organizations, academia and the private sector). Work groups will prepare reports outlining their assessment and recommendations (draft report expected March 2010, final report expected July 2010).

Work groups also will help formulate relevant questions to pose to members of the public through citizen conversation tool-kits, and to the wide range of National Conversation stakeholders through the web-discussion platform and at public regional and community forums.

Who should apply?

Work group members should have demonstrated expertise, experience and/or interest in the topics to be covered by the work group. They should be skilled in collaborative group processes. Finally, prospective members will need to have time to devote (an average of 10 hours per month) throughout the 18-month project period and should be willing to travel for occasional in person meetings. 
RESOLVE and NCEH/ATSDR are committed to forming work groups with representation from a broad range of perspectives and expertise. We are seeking balanced membership across the public, private and nonprofit sectors, including:

  • Federal agencies;
  • State and local public health and environmental agencies;
  • Tribal groups;
  • Public health and environmental organizations;
  • Community-based organizations;
  • Industry;
  • Academic and research institutions, and
  • Individuals.

Nomination Process

Nominations for work group membership should be submitted using the online submission provess (see submit nomination button below). Self-nominations are encouraged. To nominate someone other than yourself, please confirm the nominee’s interest in membership prior to submitting the nomination form, and be sure to include your name and contact information in the “Nominating Individual” fields. Nominations will be accepted until July 20, 2009.

Selection Process

Each work group will be comprised of up to 30 members. Nominations will be reviewed by the work group chairs, RESOLVE and NCEH/ATSDR staff to ensure balanced representation. Applicants can expect to receive a response regarding selection by August 28, 2009.

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