Memo from Alison Johnson: Chemical Sensitivity Foundation

Memo from Alison Johnson: Chemical Sensitivity Foundation

 

With talk about ideal national organizations for the chemically sensitive circulating, this seems an appropriate time to send out the following message, which I hope you will share with others on list serves or in groups to which you belong.

 

The Chemical Sensitivity Foundation, which I chair, is a national 501(c)3 nonprofit foundation that in the last nine years has represented MCS interests in what I think has been a fairly effective way, given the difficulty of raising money in this field. That difficulty relates to two problems. First, people with MCS are for the most part extremely short of money and therefore are not in a position to donate much to our cause. Second, mainstream foundations and wealthy people are not likely to donate large sums until MCS is more widely accepted. These potential donors will hesitate to donate to the cause when they learn that the medical community in general is quite skeptical about MCS. 

 

When I decided to found the Chemical Sensitivity Foundation in 2001, I asked people to be on the board whom I knew very well. Most I had known for many years. I had met almost all of them in person, been in their homes in several cases, and had talked with them by phone frequently, so I had a good idea about who was well-informed, effective, reasonable, and reliable. I chose people who had been dealing with MCS as patients or the spouse of a patient for many years, usually a couple of decades. All but one had a proven track record of major national contributions to the MCS community; their names and reputation were widely known among the chemically sensitive. This group has worked together so well that no one has left the board since we founded the CSF nine years ago.

 

One important aspect of the Chemical Sensitivity Foundation is that the other board members have the power to vote me out of office at the annual meeting. We also list the name of each board member on our website, together with where they live. I know of no other MCS foundation that can vote its leader out of office; most other MCS foundations do not list their board members.

 

During the last year, the CSF has been responsible for getting copies of my book Amputated Lives: Coping with Chemical Sensitivity into the hands of every member of Congress, every governor, and every member of the state legislatures of California, Virginia, Pennsylvania, New Mexico, Indiana, Nebraska, and Washington. (Targeted donations from residents of those particular states paid for the latter books.) We also sent copies to the top 30 department heads at the EPA and the top dozen at the NIEHS and the ATSDR. If you are not familiar with my book, you may want to read excerpts on my website, www.alisonjohnsonmcs.com. The Foreword by Dr. Christine Oliver, a professor at Harvard Medical School, is particularly useful in giving the book some credibility with people outside the MCS community. Over the years, copies of my other two books and my documentaries, Gulf War Syndrome: Aftermath of a Toxic Battlefield and The Toxic Clouds of 9/11: A Looming Health Disaster, have also been given to every member of Congress. My 9/11 film contains interviews with three members of Congress and with experts who have major standing nationally outside of the MCS community. My Gulf War Syndrome film was accompanied by a letter of endorsement from Ross Perot, and Congressman Jerry Nadler (Ground Zero district) provided this endorsement for my 9/11 film: "I wish every politician and policymaker could see this moving and powerful film."

 

One very important aspect of the CSF website, www.chemicalsensitivityfoundation.org, is the extensive bibliography of research on chemical sensitivity that has been published in peer-reviewed journals. The website also contains the link "Fragrance Issues" that leads to the groundbreaking CDC policy that includes fragrance-free standards in all CDC facilities throughout the country.

 

In April, I was asked to chair a series of roundtable discussions titled "Multiple Chemical Sensitivity" at the CDC national Healthy Housing conference in New Orleans. In the past month, I have given 23 radio interviews about the potential for MCS to develop among the oil spill cleanup workers. These interviews were with fairly important radio stations with substantial numbers of listeners, including stations in Boston, Austin, Houston, Baltimore, Milwaukee, Philadelphia, and Miami. I attend many of the Washington or Boston meetings of the Research Advisory Committee on Gulf War Veteran's Illnesses. This VA appointed committee is largely responsible for influencing millions of dollars of research into questions that are quite closely related to MCS. During the last decade, I have traveled to London, Wiesbaden, Ottawa, Montreal, and Halifax to show my documentaries to MCS groups. My DVDs are now circulating in many European countries.

 

The CSF is focusing at this point on raising awareness of MCS because that is a realistic goal, given our present very limited funds. It's clear that most of the other MCS projects we would like to work on depend upon raising substantial money for the cause. That will become much easier to achieve if we can convince the general public that the condition is real and physiologically based. You can all help in our fundraising efforts by encouraging others to visit our CSF website and to support our foundation financially. We would be happy to include anyone on our mailing list who sends me their address.

 

In closing, let me include the résumés for the CSF board members.

 

Chemical Sensitivity Foundation Board Member Resumes Alison Johnson, chair of the Chemical Sensitivity Foundation, received the American Academy of Environmental Medicine's Carleton Lee award in 2004 "In recognition of exemplary efforts in furthering the principles of Environmental Medicine." She is a summa cum laude graduate of Carleton College and studied mathematics at the Sorbonne on a National Science Foundation Fellowship. She received a master's degree in mathematics from the University of Wisconsin, where she studied on a Woodrow Wilson Fellowship. She has produced and directed documentaries titled Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, Gulf War Syndrome: Aftermath of a Toxic Battlefield, and The Toxic Clouds of 9/11: A Looming Health Disaster. She has also edited a book titled Casualties of Progress: Personal Histories from the Chemically Sensitive and has written a book titled Gulf War Syndrome: Legacy of a Perfect War. "In 2008 I published my latest book, Amputated Lives: Coping with Chemical Sensitivity. For information on these books and DVDs, see www.alisonjohnsonmcs.com   Pam Gibson, Ph.D., is Professor of Psychology at James Madison University. She received her Ph.D. in clinical psychology from the University of Rhode Island in 1991 and has since studied the life impacts of having environmental sensitivities. Dr. Gibson is the author of the book Multiple Chemical Sensitivity: A Survival Guide, 2nd ed., as well as numerous journal and conference papers. For further information on Dr. Gibson's book, see www.earthrivebooks.com and for her research, see www.mcsresearch.net   Lynn Lawson is a Phi Beta Kappa graduate in chemistry from Beloit College and received her master's degree in English from Northwestern University. She taught English composition and literature at the university level for several years before becoming a medical and technical writer. She has written one of the leading books about chemical sensitivity, Staying Well in a Toxic World: Understanding Environmental Illness, Multiple Chemical Sensitivities, Chemical Injuries, and Sick Building Syndrome. From 1991 to 2001, she edited the Canary News, the newsletter of the Chicago area chemical sensitivity group, which enjoyed a nationwide MCS readership.   Ann McCampbell, M.D., is a physician who had to stop practicing medicine after she developed chemical sensitivity. She was a cofounder of the Healthy Housing Coalition of New Mexico in 1994, and she is the chair of the MCS Task Force of New Mexico, which she helped found in 1995. In 1996, Dr. McCampbell organized and moderated a meeting of the Governor's Committee on the Concerns of the Handicapped held in Santa Fe. At this day-long meeting, dozens of chemically sensitive people testified about the impact of MCS upon their lives. Dr. McCampbell has written a booklet titled Multiple Chemical Sensitivity that is widely used by MCS support groups across the country. She also drafted the MCS brochure printed by the MCS Task Force of New Mexico in collaboration with the New Mexico Department of Health, the New Mexico Environment Department, and the New Mexico State Department of Education. Dr. McCampbell's latest contribution to the cause of the chemically sensitive is an article titled "Multiple Chemical Sensitivities Under Siege," which was the lead article in the Townsend Letter for Doctors and Patients in January 2001. In this article, she describes how pesticide companies are often subsidiaries or parent companies of pharmaceutical firms, a linkage that is particularly disturbing because of the enormous influence that pharmaceutical companies have through their advertising in medical journals and their funding of academic research.   Karen McDonell, who was a paralegal before a sick building exposure made her chemically sensitive, has been a leading MCS advocate in the Seattle area, where she has assembled a database of over 800 area residents with chemical sensitivity. Her efforts led to the establishment by the Washington Legislature of a task force on MCS. McDonell organized and raised funds for the first Washington State Conference on MCS, which was held in Seattle in 1993 with over 350 in attendance. She also organized a 1996 MCS conference that was cosponsored by the University of Washington, School of Continuing Education, as well as a conference on children's environmental health, and served as the facilitator at these conferences. McDonell is also a long-time board member of the Washington Toxics Coalition.   Gerald Ross, M.D., is board certified in both Family Medicine and Environmental Medicine and treated thousands of patients with MCS and many ill Gulf War veterans while on the staff of the Environmental Health Center in Dallas. Prior to that period, he served for four years in Halifax, Nova Scotia, as the medical director of the world's first government-sponsored clinic established for the evaluation and treatment of environmentally triggered illnesses, including multiple chemical sensitivity. Dr. Ross is a past president of the American Academy of Environmental Medicine and is also a Fellow of the Royal Society of Medicine in England. A frequent contributor to peer-reviewed journals, in 1998 he presented a paper demonstrating the link between MCS and neurotoxicity at the first seminar on chemical sensitivity conducted by the American Chemical Society, the world's largest scientific organization. Dr. Ross was the opening speaker at an Ottawa symposium on MCS sponsored by the Canadian Department of National Defense in 2001.   Anne Steinemann, Ph.D., is Professor of Civil and Environmental Engineering and Professor of Public Affairs at the University of Washington. She received her Ph.D. in Civil and Environmental Engineering from Stanford University in 1993. Dr. Steinemann received the National Science Foundation CAREER Award, the highest honor for junior faculty in science and engineering. She also received the highest teaching awards for both her department and the university while a faculty member at Georgia Tech. She recently published two textbooks: Microeconomics for Public Decisions (South-Western, 2005) and Exposure Analysis (CRC Press, 2006). In addition, she has published 30 peer-reviewed journal articles. Together with a colleague, she has conducted national and regional prevalence studies of MCS and published the results in the American Journal of Public Health, Archives of Environmental Health, and Environmental Health Perspectives. Further information about Dr. Steinemann can be found on her website: www.ce.washington.edu/people/faculty/bios/steinemann_a.html   Robert Weggel received a B.S. degree in physics from MIT and studied applied mathematics on the graduate level at Harvard. From 1966 to 1996, he was an analytical engineer and applied mathematician at the Francis Bitter National Magnet Lab at MIT, where he became the assistant head of the Magnet Technology Division in 1992. From 1996 to 2002, he was a Senior Research Engineer at Brookhaven National Laboratory, where he continued to design magnets. He has lectured at dozens of international magnet conferences and has written a hundred peer-reviewed journal articles. He brings to the board of the Chemical Sensitivity Foundation the perspective of a spouse of an MCS patient, and for several years he helped his wife Diane edit the newsletter of the Massachusetts Association for the Chemically Injured. He is also a former treasurer of the New England Chapter of the Sierra Club.