This is a summary of the Asthma and Multiple Chemical Sensitivity Workshop that we held in Jefferson City, Mo. on Dec 11, 1997. It was a big success.

Missouri ACCESS is an action group that was created at the workshop. It currently has 40+ members. It is an international membership roster. Missouri ACCESS does not want to recreate something that has already been done. We want to help people network. We want to be the place that the disability and other organizations send people to that need help. Missouri ACCESS will then try to inform the person what resources are available for the MCS community.

If you have not joined Missouri ACCESS, please do so.

Jeanne

Missouri ACCESS

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Awareness that
Chemicals
Cause
Environemtal
Sickness and
Suffering
Missouri ACCESS Newsletter

Asthma and Multiple Chemical Sensitivity Workshop

First, I want to thank everyone who helped to make the Asthma and Multiple Chemical Sensitivity (MCS) Workshop a success. Special thanks goes to the Independent Living Resource Center, Vacuum Man, Inc., Environmental Protection Agency (Missouri Dept. of Natural Resources), The American Lung Association, and Support Works for providing the support to make this Workshop a success. Finally I want to give a VERY SPECIAL thank-you to our Local and National MCS Community for participating in this workshop!

The workshop started out by showing a 15 minute video called MCS -- A Teacher's Story. The teacher in this video told her story of MCS. She described the beginning symptoms through total system breakdown. She became disabled, and now is fighting back for her health. Karen Sutherland
has this video, which now sells it for $25. I highly recommend it.

We then handed out a copy of a Web Page called "The Multiple Chemical Sensitivity Primer" this can be viewed at: http://www.geocities.com/HotSprings/Spa/4415/index.html

This is an excellent starting point for some one trying to learn about MCS. This is good for both the MCS community and the Community of MCS Caregivers that are trying to figure out the accommodation puzzle. Various MCS and Indoor Air Quality handouts were also distributed. The "Vacuum Man," Dale Otto, then introduced a second video. It was on Indoor Air Quality (IAQ). The focus was on ventilation systems. This is from the same video as MCS -- A Teacher's Story from Karen Sutherland. What Can I say? I built our workshop around her video; I highly recommend it.

The video was about 45 minutes this time. Then there was a series of questions, answers and discussions facilitated by Dale Otto. We had to call a stop to that. There were allot of questions on air ducts, furnaces, air exchange, tight buildings, ... Even after we called a stop, it took another 15 minutes to actually get the conversation stopped. Way to go Dale!!!!!

Mickey Marshall, from the EPA then presented a slide show and discussion on Indoor Air Quality in homes, schools and offices. There was allot of interaction and interest. Common IAQ concerns and solutions were presented. This portion of the workshop was scheduled to be 1.5 hours. It was presented in 45 minutes. I appreciate how fast Mickey can talk. I apologize for the time crunch. Again, like the Vacuum man, Mickey had a very difficult time bringing his session to an end. Everyone wanted Mickey to continue his session. Way to go Mickey!!!!!

We then had a teleconference with four people who suffer from MCS. Cassandra, from North Carolina, acted as the discussion moderator. Alice, from Florida, and Betty from Michigan, came in as seasoned people afflicted with MCS. All three of these ladies are very active in National MCS Awareness campaigns. Peggy, from Fulton, Mo., too debilitated by MCS to chance her health on attending the workshop, also participated in the Phone Conference.

During the Teleconference, we discussed Stephanie's accommodation plan at Thomas Jefferson Middle School. Becky York, Stephanie's counselor, was warmly applauded for her efforts to accommodate Stephanie. The MCS Community anxiously coaxed Becky into discussing how she was able to successfully accommodate a middle school student with MCS. Becky was definitely the inspiration the MCS community needs. Other MCS accommodation issues were discussed. Initial strategies for collaboration and education were discussed.

Missouri ACCESS came to life during the Workshop. Now there are over 40 members and growing steadily. There is more about Missouri ACCESS later in this newsletter.

After the workshop, I called a few of the participants to get their feedback. Here are some of the comments that I received.

"We need to have regularly scheduled meeting where we can meet face to face."

"We need to take advantage of teleconferencing with other people with MCS across the Nation."

"We need to work with the schools. They are interested in learning about MCS and it's prevention."

"There is a need to work with the hospitals about the special health care needs of the MCS Community."

"There is a priority need to work with the employers in the community to address the specials concerns of the MCS community in the workforce. We need to use education as a tool to bring about a sensitivity and awareness about the needs of the MCS Community. We need to work closely with the employers to help in accommodating the MCS Community in the workforce. We will work closely in developing strategies whereby an employee can remain in the workforce without causing additional damage to their health."

"We need to put a news letter together. We can use the newsletter to share coping techniques, Ask for help, share information, the opportunities are limitless."

We will be getting together soon for the first meeting of the Missouri ACCESS to discuss how we will address the current issues that exist in the MCS community.

I want to thank all who participated in the Asthma and Multiple Chemical Sensitivity Workshop.

Please take a few minutes to fill out the survey. I will use your input to make adjustments to the next workshop. Your input is vital to our success. Your input will be summarized and sent out to everyone who receives a Missouri ACCESS Newsletter.

Those who attended this initial workshop will receive an initial six-month complimentary newsletter. The newsletter will address current issues that the MCS community experiences. We will focus on solutions and ask the readers for their input into solutions for the issues that will be presented in the newsletters.

Again, thank you for making this Workshop a Success!!!!!

-- Jeanne
Missouri ACCESS

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Asthma and Multiple Chemical Sensitivity Workshop Survey
Jefferson City, Missouri
December 1997

Please return to Missouri ACCESS by January 15, 1998

  1. Identify one thing that you learned at this workshop that you did not previously know.

  2. What can we do to make the workshop better?

  3. Is there additional issues that you would like to have discussed at this workshop in the future?

  4. Are there issues that the MCS community, or those trying to accommodate the MCS community would like to have a Workshop address?

  5. Additional Comments, Suggestions, Complaints, and/or Questions:

PLEASE TAKE TIME TO FILL OUT THIS QUESTIONAIRE

Either return by email to: mo_access@yahoo.com
or
Snailmail to:
Missouri ACCESS
P. O. Box 264
Jefferson City, Mo. 65102

Please Return AS SOON AS POSSIBLE!

YOU MAY COPY AND DISTRIBUTE THIS NEWSLETTER!
Please share this with anyone who may be interested.

Missouri ACCESS -- A Vision

Missouri ACCESS is beginning to breathe life. We are trying to assess the needs of the MCS community. Along with assessing the needs we will be trying to evaluate what resources exist for people as they start to address MCS issues. If you have any brochures, information, newsletters, resources of any type, please let me know and I will be creating a resource list and reviewing information on MCS or related issues.

If you have a product that you would like the Missouri ACCESS to share with it's members please send a summary of your product or service to Missouri ACCESS. Please include ordering and pricing information. Missouri ACCESS does not have the resources currently to purchase or join organizations. We will only be able to accept complimentary or samples free of charge.

If you would like to have something published in this newsletter, send it , on diskette, preferably Windows '95 or MS-Word format, to Missouri ACCESS.

Missouri ACCESS -- Membership Drive

The Missouri ACCESS membership drive has begun.

Missouri ACCESS is a newly formed group that has itís beginnings in Missouri, but has grown into an international organization. The group was formed to address issues that the Multiple Chemical Sensitivity Community (MCS Community) are confronted with. The group's goal is to break down barriers for their community. They plan to use education and awareness campaigns to break down the barriers.

This membership drive has several goals. The first goal is to identify a community of people that are Chemically Sensitive, or addressing MCS issues. This community needs to be communicating with each other. This will be a forum that will allow a person who is trying to address MCS related issues to have a resource of talented people to draw expertise and opinions from.

The next goal is to identify where there are needs and what the needs are in the MCS community. We are also asking for information on what talents and strengths members have to give to this group.

I have questions on the membership form that will help set the direction that this group will take. I will summarize the information that I receive and send it out in the February Missouri ACCESS Newsletter.

PLEASE TAKE TIME TO FILL OUT THE MEMBERSHIP FORM (below)

Either return by email to: mo_access@yahoo.com
or
Snailmail to:

Missouri ACCESS
P. O. Box 264
Jefferson City, Mo. 65102

Please return Membership Form AS SOON AS POSSIBLE!

Missouri ACCESS Membership Form

(For now, please print out the form and fill in and mail to Missouri ACCESS or copy from here and paste into the email message area -- Missouri ACCESS -- and fill out form there. Sorry about the inconvenience.)

Name:

Organization:

Address:

City/State:

Zip Code:

Country:

Home Phone Number:

Email address:

Missouri ACCESS Membership Questionnaire

Be as thorough as possible in your answers. If a question does not apply to you, do not answer it. If you feel uncomfortable with a question, do not answer it. I will use this information to identify a direction for Missouri ACCESS. Thanks for collaborating!!!!!


    __ Do you have MCS? Would you please share your story?

    __ Do you know someone with MCS? Would you share your story as a Caregiver?

    __ Do you think Missouri ACCESS can help you? How?

    __ What kinds of needs do you presently have?

    __ Do you think you could help Missouri ACCESS? How?

    __ Could you make a donation to Missouri ACCESS for a one year membership?
    There will be no price set, at this time. If you need a complimentary membership to Missouri ACCESS that is OK.

    __ Can you donate time, talent, resources, etc.? If so what?

    __ If you had the opportunity to speak to someone who could make a difference, with respect to the MCS issues, who would it be? What would you tell this person? What would you ask for?

    __ What do you think the top three issues for the MCS community are? Who would you turn to for a solution to each issue?

    __ Are you currently working on any issues related to MCS?

    __ What are you working on? _____________________________________________

    __ What kind of help would you like to receive? ___________________________

    (Although I am not able to offer any help at this time, we are gathering information in order to better serve you in the future. Missouri ACCESS is just now forming and does not have the resources to offer substantial help at this time.)

News From Missouri

Call for Information

Missouri ACCESS would like to track all efforts for accommodating the Chemical Sensitivity. We would like to hear about your successes, your failures, and your current battles. Send any stories or documentation of accommodations that have been made. Please send your information to Missouri ACCESS.

We depend on the sharing and cooperating. MCS is an illness that must be taken seriously. Too many have suffered for too long. It does not have to happen.

Please send Missouri ACCESS an article of successful accommodations, struggles, or complete loss of hope to be considered for publishing in the Missouri ACCESSnewsletter. I hope to be able to educate people on the current MCS issues and what is or is not being done to accommodate the person with MCS. I would prefer to receive the articles on diskette, Windows '95 and MS-WORD format (NOT an absolute requirement).

Call for Videos

Missouri ACCESS is collecting videos from the public. The videos should be on VHS. I would like to see the faces of the MCS community. I would like to hear your story on how you became ill. What your life is like struggling with MCS. How you regained your health. What you would like to tell some one who is being asked to accommodate one of our MCS community members. What you think should be done to make a community more accessible to the Chemically Sensitive. Please limit your video to 3 - 5 minutes.

These will be shown to different state and local authorities in an effort to educate these authorities on current issues and what they CAN do to help.

I would be happy to have a second portion that would be shown to the local MCS community.

Please send the videos to Missouri ACCESS. The videos will become the property of Missouri ACCESS to use in education campaigns. If you want to disguise yourself or if you would want to be behind a sheet that it OK. If you would simply want to do a cassette tape, that is also OK. If you would want to just write a letter, fine with me. If you would want just to email Missouri ACCESS, well, I am easy, that is OK. The main thing is that we will be sharing of information with others.

Next Newsletter:

The next issue of the Missouri ACCESS will include the following articles --

  • Summary of the results of the Membership Questionnaire.
  • Initial results of the membership drive survey will be summarized for the February issue. (Please return the questionnaires by January 20th, to be included in the initial summary.)

  • Where did Missouri ACCESS come from? I have received several requests to share my story on how Missouri ACCESS was founded. I will share my story: Who I am, why I founded Missouri ACCESS, how I am related to the MCS Community, and what I hope Missouri ACCESS is able to accomplish.

    Emergency Organic Food Relief Needed

    Person with a life-threatening reaction to pesticides must have doctor prescribed Organic diet. This person suffered and survived an acute organophosphate/organochlorine and solvent poisoning. According to the World Health Report, most people die after this type of poisoning. Donations in any amount are appreciated.

    Send donations to Missouri ACCESS -- 100 percent of donations will be forwarded to this person's Organic food account.

    Missouri ACCESS
    P. O. Box 264
    Jefferson City, Mo. 65102

    School Video

    The video records the April 10, 1997 Conference on Improving IAQ in Schools cosponsored by the Institute for Science & Interdisciplinary Studies, Environmental Health Coalition of Western Mass., American Lung Association of Western Mass., and Western Mass. Coalition for Occupational Safety and Health with funding through our EPA Environmental Justice Small Grant. The program featured John Spengler, Ph.D., Harvard School of Public Health, "IAQ in Schools: Understanding the Problem," followed by presentations by Meg Gallagher, a local teacher, "MCS: A Teacher's Story;" Eugene Benoit, EPA Environmental Engineer, "Tools for Schools;" and Claire Barnett, NY Healthy Schools Network, "Organizing for Healthier Schools."

    We were pleased that the presentations were so effective both in conveying information about the causes of and solutions to poor IAQ in schools, and in presenting MCS as a possible consequence of poor IAQ, to an audience of 200, including school administrators, maintenance staff, nurses, teachers, and people with MCS. The conference spun off a Western Mass. Healthy Schools Network group and inspired others to present similar conferences. Meg's talk is truly gripping and educational and changed many opinions favorably towards MCS.

    The video is available for $25. An audio tape of the Conference is also available for $10, but as there are a lot of slides and visual materials, the video is really far preferable. If interested in ordering, send your check made out to EHCWM to:

    Karen Sutherland
    410 River Road
    So. Hadley, MA 01075.

    Please make sure you indicate what the check is for and include your mailing address.

    Hope you find it useful!

    Best wishes,

    Karen Sutherland
    Director, MCS Initiative
    Institute for Science & Interdisciplinary Studies

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