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2014 Volume 26 Number 1
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Finding our way as a fledgling organization built lifetime bonds
By Linda Hildebrand
Phyllis Mervine and I first met at a Spring 1990 meeting when
the Lyme Disease Resource Center (LDRC) was formed. Phyllis
was elected president and continued as the editor of
The Lyme
Times
. At that time, only a few printed issues had been produced
with limited distribution.
Phyllis was also busy working at a Mendocino County Lyme
clinic and in the midst of organizing the first medical conference
to be held on the West Coast. I was elected treasurer, as there were
only a handful of us who had any energy to devote to this project.
I had been sick almost three years, had undergone treatment in
1989, but had been unable to return to work. I was eager to feel
that I was contributing to what I expected would be a short-term
project. At that point, I had only attended a handful of support
group meetings, so my knowledge of Lyme was limited.
We held the first LDRC medical conference on May 12,1990 in
Hopland, CA, with a public forum following. Phyllis had done
most of the symposium organization on her own, but there still
was a lot of last minute activity. She had forgotten the programs,
so had to run back to her office to fetch them, a 45-minute
roundtrip. Meanwhile Dr. Lavoie sent me hunting for flowers to
give her – a serious challenge amid the Mothers’ Day rush. But all
went well and both events had full capacity attendance.
During the pre-Internet decade, the all-volunteer LDRC op-
erated on a shoe-string with much on-the-job training required.
We were like sponges, always studying and taking in information.
Phyllis and I relied on each other greatly for encouragement and
support. We were fortunate to have the assistance of many sci-
San Francisco physician Paul Lavoie, chairman of the first LDRC
conference on Mother’s Day 1990, presented Phyllis Mervine with a
bouquet of red roses.
M. MacDougal photo
tapped. Directors were volunteers from all parts of California and
Nevada, some driving long hours in spite of illness to conduct
business.
Early on, the group organized physician and patient symposiums
featuring such speakers as Paul Lavoie, MD, John Drulle, MD,
Joseph Burrascano, MD, Robert Lane, PhD, and many other phy-
sicians and researchers working on the front line on behalf of Lyme
disease patients. If energy or experience was lacking for those or-
ganizing the events, perseverance and devotion to the cause carried
them through.
Patients and support groups were brought together and given a
broader voice in a common cause through the LDRC and
The Lyme
Times
. People who previously had felt isolated in their battle against
a terrible disease were given hope. When the controversies started
raging in the medical community about diagnosis and treatment,
the LDRC stood alongside other organizations nationwide to fight
for patients and physicians who were caught in the middle.
The LDRC evolved into CALDA (California Lyme Disease Asso-
ciation). Lorraine Johnson grew the organization and inspired an
even higher level of activism. Over the years there has been a long
list of people who have contributed expertise, energy and financial
support. But it is certain that the dogged determination, dedication
and perseverance of those early pioneers in the Lyme Disease Re-
source Center set the foundation and direction for the organization
to grow and evolve into what it is today:
LymeDisease.org
.
Despite the name changes, this organization has always been
about people – patients, their families, physicians and researchers.
My association as director went from 1990 to 2002. Although some
of the memories have gone rather hazy, it is fun to remember the
original group, in particular Phyllis Mervine (first and foremost,
of course!), Linda Hildebrand, Thora Graves, Jean Hubbard, Karen
Chew, Walt Prehn, Bob Lane, Mitch Hoggard, Barbara Barsocchini,
Stephanie Propp, Ray Stricker, Marilynn Barkley, Rene Rothstein,
Lorraine Johnson, and Nick Harris.
LDo president Phyllis Mervine, Columbia Univ. Lyme Research Center
director Brian Fallon, LDo treasurer Nancy Brown, and Mountain View
Lyme disease support group director Karen Chew pose for a photo
after the LDo’s 2000 San Francisco patient/medical conference at
which Fallon was a keynote speaker.
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