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Living With Parkinson's - Lynn Fiedler 2003
For most people, “epiphany” is little
more than a word encountered on a college entrance exam. But for Lynn Fielder,
who was diagnosed at age 30 with Parkinson’s disease, it spells out a defining
moment in her life. One day it struck
her that her life’s experiences led to one conclusion – she should devote
herself to galvanizing support for Parkinson’s causes. That lasting realization
led her to quit her job and raise her voice in support of finding a cure for
the disease, which claims more than one million victims in the United States
alone.
“I realized that everything in my past
had added up to this purpose,” said Fielder, now 42. “I’m perfectly positioned,
and I’m younger and more mobile than most people with Parkinson’s. Now my
mission is to do whatever needs to be done to find a cure to Parkinson’s.”
In her relatively brief career, Fielder
has worked with the U.S. Congress, for the Agency for International Development
and, for 13 years, in an executive position with Planned Parenthood Mar Monte,
which runs 34 clinics in California and Nevada. During her career, she learned to face down adversaries,
cultivate ties with power brokers, talk in media sound bites, and never let the
word “no” deter her.
Now Fielder is applying that savvy to
finding a cure to Parkinson’s. “In almost in every action, I try to leverage my
previous experience,” she said. “I take every single opportunity to speak out.
I do TV and radio. The media knows me. If you need a local angle, call me.”
This fall, she was featured in a KPIX news story on Parkinson’s. Fielder has also been befriended by numerous
politicians after knocking on their doors, and has participated in scores of
fundraisers.
“She's on of the most effective advocates
I've ever met,” said Carol Walton, the executive director of The Parkinson
Alliance in New Jersey. “Lynn is not a person ever to feel sorry for herself.
She has a wonderful business sense and she knows that finding the cure to
Parkinson’s disease is just like running a business.” Fielder volunteers with several
organizations, including serving on the Gala Committee at the Parkinson’s
Institute. At last year’s gala, she launched a fund-raising effort that yielded
more than $120,000 in art donations for the event’s auction. “I have an attitude of ‘we’ve got to do
this,’” Fielder said. “So I don’t hesitate to ask anyone for anything. All they
can do is say ‘no’.” But she said it’s
her 11-year-old daughter, Maya, who may have stolen the show when it comes to
Parkinson’s advocacy. A poignant letter Maya penned is now permanently in the
Congressional record.
That came about in 2002, when the then
9-year-old Maya wrote an imaginary letter to Congress. Fielder was stunned by its power, while
still written in a child’s language. “Our whole family works hard to help find
a cure to Parkinson’s,” Maya wrote. “My mom talks about Parkinson’s to
newspapers or on the news whenever she can.
“My mom said that if researchers got enough money from Congress and from
regular people, that scientists could find a cure in five or ten years. That
would be good, because I won’t be a grown-up yet and my mom will get better and
we could go ice skating together,” she continued. “But now we have a big
problem. I heard President Bush say all cloning research has to stop…. I don’t
get it,” she wrote. She also expressed her interest in becoming a U.S.
president, to change research policies.
Soon after Maya wrote the letter, she
accompanied Fielder to Washington, D.C. to participate in a Senate hearing on
Parkinson’s chaired by Sen. Tom Harkin, D-Iowa. Harkin was so taken with the
letter that he asked that it be printed in of the Congressional Record. “As a
Congress, we can’t take the time to listen to every story, but I ask unanimous
consent that one little girl’s story be printed in the Record,” Harkin wrote in
the introduction to the letter, which ran in the May 22, 2002 issue.
Fielder’s deepest frustration lies in the
stalled progress on stem cell research as a result of Bush Administration’s
policies on the use of in vitro and cloned human embryos for research. Stem
cells are precursor cells in embryos in that ultimately differentiate into all
the tissues found in the body. Scientists believe the best hope for curing
conditions such as Parkinson’s and Alzheimer’s disease lies in the development
of therapies derived from stem cells. “Stem
cells give the hope of generating brain cells, something never thought possible
before,” Fielder said. Theoretically, scientists could implant new brain cells,
where they’d fill in for the dysfunctional cells that produce little or no
dopamine. Lack of dopamine, which is a neurotransmitter that regulates physical
movement, is the key culprit behind Parkinson’s symptoms like tremors and
muscle rigidity.
“The tragic part is politics has gotten
in the way, It’s tremendously frustrating,” she said. “The best prediction of
my future lies heavily on who’s in the White House,” she continued. The
November election is “really a life or death thing.” In August 2001, President George Bush restricted federal funding
of stem cell research to U.S. cell lines then in existence. Currently, only 12
of those cell lines are considered usable for research, although their limited
genetic diversity narrows the scope of study. Since 2002, the National Institutes of Health has provided only
$60 million in funding for stem cell research. In contrast, in 2003 it awarded
about $22 billion in grants for all biomedical research, and expects to award
slightly more than $22 billion in 2004, according to an NIH spokesman.
On a bright note, California is poised to
take a leading role worldwide in stem cell research, if voters pass November
ballot initiative that allocates $3 billion in bonds to provide stem cell
research funding to California universities and research institutes over 10
years. One of its leading backers is a Portola Valley businessman, Robert Klein
of Palo Alto-based affordable housing developer Klein Financial. He’s
contributed $500,000 to support the initiative, organized by the Los
Angeles-based Californians for Stem Cell Research and Cures.
If approved, the ballot
initiative would add muscle to state legislation signed into law in 2002 and
2003. These laws allow California scientists to study stem cells from all sources, establish a registry of embryos
available for study, and require the California Department of Health Services
to establish legal and ethical guidelines stem cell research.
Even with hope for a
stem cell cure stymied for now, Fielder emanates a positive outlook. In her
beautiful Palo Alto home, she’s surrounded by a supportive family. In addition
to Maya and her husband, Kurt - whom she describes as her “rock” - Fielder
lives with her parents, who occupy an apartment built onto their house, and her
grandmother, who lives in a cottage in the back.
While she acknowledges
that depression can have a physiological basis, she also believes that choice
plays a powerful role in one’s outlook. “I can have a bad disease and a bad
attitude, or I can have a bad disease and a good attitude,” she said. “I think
the latter is preferable. It’s like a secret to know you have that choice.”