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First National Lyme Convention, August 2001 Update
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This website has two reports: The Cure Committee and the Future Committee. Go to the link Other Committee Reports to see Social Security Disability, Litigation and Media reports.
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TOFU's First National Lyme Convention, 2001
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NATIONAL LYME CONVENTI0N
AUGUST 12, 2001
OVERVIEW AND COMMITTEE REPORTS
Approximately 200 Lyme Disease victims and others associated with the disease gathered at Liberty Mountain Resort for a one day national conference sponsored by T.O.F.U., Inc. (Ticked Off and Fed Up), a 501 (c) (3) non-profit organization dedicated to Lyme research, education, and support for Lyme victims. The event was coupled with a "Lyme Aid 2001" country music festival the previous day. That event was a "break-even" affair financially, but it brought considerable community attention and good will to the cause of Lyme awareness. Whether to go forward with another such venture remains to be decided at this writing. The basic purpose of the conference was to engage in committee-structured conversations regarding strategies for attacking the disease, enhancing public awareness about it, and providing support for its victims.
A number of conference committee reports appear below and contain a great variety of excellent proposals for future action. We are especially indebted to those who coordinated, led, and reported on the committee activities, and of course to those who contributed their ideas and moral support. Out of courtesy to the leaders and reporters, we are not naming them on this public website. Further, TOFU, Inc., in its capacities and limitations as a 501(c)(3), takes the role of facilitator only, and does not endorse any particular idea or report.
One of the overarching concerns of those attending the conference, and of others, was the existing fragmentation of efforts by disparate Lyme support groups around the nation. A survey was taken of all who participated and it was, by a margin of 99%, declared that a single national organization be formed. It was hoped that the August 12th event would become a springboard for more highly coordinated efforts stemming from the creation of a national umbrella organization. Although it seems clear that such an organization cannot yet exist because the financial base is not in place, it is equally clear that many of the ideas generated by the committees require close coordination, good will, and strong inter-group communications. It is our hope that we can work together to meet those worthy aims.
Many have suggested that an important next step in drawing the Lyme community together and marshaling its resources is to convene another national meeting, perhaps two days in length, during the summer of 2002. That event could serve the purposes of creating a formal national Lyme Disease support association or confederation, a board of directors/officers, a membership dues structure, and an action agenda. Without this follow up meeting, a number of our 2001 initiatives may be lost. More particularly, it is the recommendation of TOFU that conversation continue throughout this year via message board groups sponsored by each of the Committee leaders. To date, three such groups exist. It is essential that the leaders of these groups now step forward to hold public commentary on these reports, and widen the numbers of those who are willing to participate.
Finally, the Gettysburg contingent wishes to thank all who invested in the summer conference by sharing their time, energies, and great good will.
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