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TOFU's Lyme Convention

2001 Convention • 2002 Convention

2001 LYME CONVENTION

TOFU's First National Lyme Convention, 2001
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.

2002 LYME CONVENTION

The TOFU 2002 Convention, July 27 and July 28, was an INCREDIBLE success!!!! The victims, advocates, friends and doctors got together and we created a Declaration of Independence, as well as form a political group called the NATIONAL LYME CONGRESS.

We are democratic - anyone who shows up at our meetings gets one vote, and majority rules.

We were even so lucky as to have Dr. Ted MacNeill, dubbed for the day "BEN FRANKLIN, " read us our Declaration to wild cheers and TOFU'S!!!!

Major steps have been taken in our groups, and our new Declaration is below.

The NLC will have its own website and its own lifeform!

WE ARE ONE AND WE RUMBLED!!!!!

Thank you all, especially Dr. B for starting the process.

HELP ERADICATE LYME DISEASE

THE DECLARATION OF THE NATIONAL LYME CONGRESS

WHEREAS, Lyme, Babesia, Ehrlichia, Bartonella and other vector borne diseases are potentially devastating and life threatening; and

WHEREAS, these infectious diseases are the largest rising public health crisis in the United States; and

WHEREAS these diseases are generally misunderstood by the medical community and the public; and

WHEREAS victims of Lyme and other vector borne diseases have a right to adequate health care by any physician of choice, supported by an adequate and progressive health care and medical research system;

WHEREAS support for diagnosis, treatment and continuing care for these disease victims must be made a national priority for the sake of those infected, their children, and the generations to come; and

WHEREAS coordinated efforts are needed at the local, state, and national levels to understand, report, control, and ultimately eradicate these diseases;

NOW THEREFORE, BE IT RESOLVED THAT the National Lyme Congress hereby creates and sustains a national organization on July 28, 2002, in Gettysburg, Pennsylvania for the following purposes:

1. To foster education about the causes, prevention, and effective treatment of Lyme, Babesia, Ehrlichia, Bartonella, and other vector borne infectious diseases;



2. To support responsible and objective research aimed at creating accurate disease testing, relief, and cure;



3. To encourage the active support of these goals by public officials at the local, state, and national levels.

WE HEREBY SET OUR HANDS TOGETHER ON THIS PAPER TO SHOW OUR MUTUAL SUPPORT AND AGREEMENT FOR THE CREATION OF THIS BODY: Stories of the lyme victims were taped and are in the editing process. They are great!

TOFU, Inc., as a 501(c)(3) sponsored these events as part of our charter, but we are not responsible for the material which came out of these groups. We are the hosts for the victims of Lyme disease.

The first anniversary of TOFU, Inc. arrived in January, and what a wild ride it has been! As a first year 501(c)(3), we conducted the very first Lyme Aid 2001 on August 11, 2001. It was a country western festival sponsored by our local radio station and newspaper.

The festival included the talents of Chris Cagle, Mike Walker, Borderline, Amanda Perko, Marshall Dylan Band and Tammy Cochran. This event was widely and generously covered in our surrounding areas, and it was enthusiastically received. The performers donated their time, but we still paid for room and board and staging, which ran the most. All in all, we broke even on the event, which all the "people in the know" think is a good thing.

The next day, we held the very First National Lyme Convention, which was extremely successful. Dr. B, Dr. O's attorney, and Pat Smith, each spoke at the plenary session, as well as Ken Mott, the Director of TOFU, Inc.

After the plenary session, LoveyonLyme crowned Mr., Ms., Teen and Child Lyme America who proudly wore their garners. Amy Rose is the daughter of Mama Rose and James in Texas, both of whom are Lyme victims, sang while we ate and sang a rousing rendition of MisTick's version of Grievin' on a Lyme Train. We had Bob the Poet, we had teens singing songs, we had sunflowers presentations, and we had lovely baskets donated by those who worked hard and long on them, and they paid off handsomely for TOFU, Inc.

Thank you to all involved.

Important work was begun on August 12, 2001 in the Cure Committee, Committee for the Future, Media Committee, Social Security Committee, Litigation Committee, the Rabble Rousers, and even the children created their own committee.

NOTICE: The information provided here is for informational, educational and entertainment purposes only. It is NOT intended to replace, and should not be interpreted or relied upon as medical or professional advice. We are victims of tick borne illnesses, and any advice from those in the medical profession are given as advice from their perspectives as patients themselves, and/or from treating a large number of patients, but NOT as medical advice. Your reading and/or using any information from this site means that you agree to the terms and conditions detailed in this disclaimer.