It
has been many years since the US Food and Drug Administration (FDA) approved an
innovative new therapy for Parkinson’s disease. It’s frustrating. And frankly
with the innovation and advances the world has seen in other disease areas it
is downright unacceptable. We
believe that there is a better way and new path forward.
We have asked
ourselves some difficult questions. With a disease as complex as Parkinson’s,
what is the best path forward in drug discovery, research, and development? Now is the time to approach
Parkinson’s disease research in a new and different way—modeled after the
successes realized in other diseases.
We are determined. We are optimistic. But we
are also realistic and understand the challenges we face. We know that
the development and approval of new treatments, and hopefully one day the
discovery of a cure, will take time. So equally important, we are dedicated to
providing world-class care and empowering both people living with Parkinson’s
disease and their loved ones to live life to the fullest now—despite a
Parkinson’s diagnosis.
Here's the
great news. Enhancement and expansion of care and quality of life improvements today also play a critical role
in our ability to fast-track new therapies for tomorrow.
With your support, we have the model to make it happen. We have spent the past 25+ years positioning the Parkinson's Institute and Clinical Center to take a directive leadership role and capitalize on these emerging opportunities.
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Now's the Time. Our Next Era of Hope.
In February 2014, Carrolee Barlow, MD, PhD joined the Parkinson’s
Institute as Chief Executive Officer (CEO). It was a truly
historic moment as Dr. Barlow became only the second CEO in
the Institute’s 25-year history. Founder and former CEO Dr. J. William Langston
assumed a full-time Chief Scientific Officer role and gained the ability to
commit additional time and energy to his Clinical Center practice.
It is a very hopeful and optimistic time given the critically
important role that the Institute can continue to play in the development and
discovery of new and better treatments for Parkinson’s. Our integration of
clinical care, laboratory research, clinical research, and clinical trials is
powerful and significant.
We are uniquely positioned to align the Institute,
people living with Parkinson’s and their loved ones, and key stakeholders,
including academia, industry, and regulatory agencies, to innovate and accelerate
the pace at which we expand our understanding of Parkinson’s and bring
promising and safe new therapies to people touched by this disease.
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One Major Obstacle is Funding
While our best and brightest minds in Parkinson’s
care and research have attracted numerous research grants, the Institute relies
almost entirely on philanthropy to fund our unique and powerful model.
Government and foundation research grants only
cover a modest portion of the expenses associated with our Institute’s
remarkable science. Philanthropy drives the pace at which our researchers are
able to pursue their work.
Caring for people with a disease as complex as
Parkinson’s does not fit neatly into today’s healthcare economics. It takes
much more than an assembly line approach and 15 minute consultation to
provide appropriate and impactful care. Philanthropic support of the Institute
ensures that no sacrifice is made and no corner is cut.
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Challenges with the Traditional Care
and Research Model
In the traditional care and research model, academic institutions, health
care providers, and pharmaceutical companies often do not work together. In
academia, researchers who are focused on basic science laboratory research
pursue new discoveries and the publication of these findings without an
understanding of the real-life challenges experienced by people living with
Parkinson’s and their families. All too often this can result in large amounts
of funding being invested in research that cannot be effectively translated into
tangible and immediate benefit. If there is not a safe or economical path to
delivering the resulting therapy or treatment, a discovery is just a discovery that
lives only in a publication within a journal. People personally touched by
Parkinson’s disease are left questioning, “What does this mean for me?”
The traditional care and research model also breaks down for those
providing care day-to-day for people living with Parkinson’s. Physicians and
specialists do not have the opportunity to share their insights and knowledge
with research teams who are pursuing groundbreaking discoveries. Subtle but
often serious signs of whether a therapy or intervention may or may not be
working, and quality of life considerations for the person living with
Parkinson’s, rarely make their way beyond the clinic walls.
Lastly, the traditional care and research model fails at a critical juncture
when industry does not conduct clinical trials because both
the expense and risk associated with bringing a new product to market is simply too high. Pharmaceutical companies are in the greatest position to develop new therapies and treatments, but too many great innovations
and discoveries are never tested because they do not make best economic sense.
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Why Our Model Positions Us to
Make the Greatest Advances
Our highly specialized and integrated model has allowed us to make some
of the greatest advances in Parkinson’s care and research. Not only do our doctors and specialists work hand-in-hand with our scientists, but they are also our researchers. At the Institute our neurologists are Movement
Disorder Specialists, Parkinson’s disease experts, and they work
collaboratively with scientific and clinical research teams within one holistic
environment. Critical observations and insights and highly qualified data from
our Clinical Center guide our laboratory and clinical researchers in their
efforts. For 25+ years we have challenged the traditional care and research
model.
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How You Can Join Us and "Get Your Indiegogo On!"
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Contribute today. Give
graciously, generously, and to the fullest extent that you can. Go beyond
"giving back". Give a gift from the heart. Invest in today, tomorrow, and hope.
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Make some noise! Ask your
family, friends, and co-workers to help spread the word about our Indiegogo crowdfunding campaign. Check out Indiegogo's easy to use
share tools above.
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Stay connected. Check back
often as our campaign success unfolds and we talk more about the new initiatives at the Institute that you are helping to fund. Connect with the Parkinson's Institute and
Clinical Center through our Website, Facebook, Twitter, YouTube, and/or
subscribe to our eNews.
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About the Parkinson's Institute and Clinical Center
We march to the beat of our own drum. 25+ years ago, Dr. J. William Langston and a dedicated group of Parkinson’s disease experts set out
to create a better way to conduct research and provide care. We would go
beyond your standard doctor-patient relationship. Patients would become
partners in developing their care plans, improving their quality of life, and
discovering new strategies to confront and manage their disease. Compassionate
care would work hand in hand with cutting-edge research to seek answers,
develop new therapies and treatments, and ultimately work toward a cure. Our
result was the Parkinson’s Institute and Clinical Center based in Sunnyvale,
California.
Along the way
we have built something that is thoroughly unique.
We are America's only independent non-profit organization combining world-class care, clinical research, laboratory research, and clinical trials for Parkinson's disease under one roof. Our Institute is a place where
people living with Parkinson’s can both pursue their care and play an important
role in research that will undoubtedly continue to change the landscape of
Parkinson’s science and medicine.
By virtue of
our design, we are uniquely equipped to provide the best care, accelerate
promising science, and perhaps most important—integrate the two and everything
in between. People living with Parkinson’s and their loved ones are at the
center of all that we do. Learn more today.
Institute
research focus areas include: biomarker discovery and clinical research;
translational research on genetic forms of Parkinson’s; a world class LRRK2
research and drug discovery program (LRRK2 is the most common cause of familial
or inherited Parkinson’s disease); stem cell modeling referred to as “Parkinson’s
disease in a Petri dish”; and clinical trials and research on the non-motor or
non-movement related and early features of Parkinson’s.
Parkinson's. We're In This Together.
On behalf of all people living with Parkinson’s disease and their loved
ones—we thank you from the bottom of our hearts.