Editor’s Note: This is a guest column by John L. Lehr, CEO of the Parkinson’s Foundation, marking Parkinson’s Awareness Month.
Every April, the Parkinson’s Foundation engages the global Parkinson’s community to support this national observance — but this year, these activities are particularly important. Why is this the case? By 2030, more than 1.2 million Americans will be living with Parkinson’s disease. The ongoing growth of this population further highlights the increased importance of optimizing expert Parkinson’s care and treatment, which would help future caregivers and ease the incredible strain on our health care and elder care systems.
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John Lehr, CEO of the Parkinson’s Foundation.
(Photo courtesy of the foundation)
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A key milestone toward the goal of advancing research toward a cure is the upcoming publication of the findings of the Parkinson’s Foundation Prevalence Project, which is considered the most comprehensive estimate to date of Parkinson’s disease in the United States and Canada. This study will confirm that almost one million Americans will be living with Parkinson’s disease by 2020, further highlighting the growing importance of optimizing care and treatment.
Every day, people living with this disease throughout the U.S. fight to manage their progressing symptoms — from tremors to freezing episodes, to the depression and anxiety that often follow a Parkinson’s diagnosis.
For these reasons, this pivotal study will help establish the incidence, distribution, control, and prevalence of Parkinson’s in the United States. In addition to providing unprecedented clarity in terms of state-by-state numbers, the study will provide researchers with the first glimpse into the ways that the prevalence of Parkinson’s diagnoses varies by region. Researchers are now analyzing if this variance is due to susceptibility to the disease, access to care or available healthcare services, or a combination of these factors.
Later this year, the Parkinson’s Foundation will lead phase two of this landmark study. In collaboration with our Parkinson’s community, researchers will next assess the true economic burden of this disease. This will enable us to better understand the bigger picture of just how many people are impacted by Parkinson’s — financially and socially. This number will help the Parkinson’s Foundation to better attract the attention of federal and state government, as well as the pharmaceutical industry, to the growing need and urgency of addressing Parkinson’s — ultimately providing much-needed additional research and resources to treat people living with the disease.
Establishing these numbers and using them to better educate Parkinson’s communities and influence legislation will help the Foundation to provide tailored resources, outreach, and advocacy to the underserved Parkinson’s populations across the nation.
At the Parkinson’s Foundation, we continue to support scientific research, including the largest clinical study of Parkinson’s in the world, to help better understand exactly what causes the disease, how to better treat the disease, and how to potentially stop the progression of the disease and improve the lives of everyone living with it. We also fund promising scientists who study the basic mechanisms of Parkinson’s that are critical to developing new treatments and medications. Our work is critical. Why? Simply put, when we raise awareness about Parkinson’s and how the Foundation helps make lives better for people with Parkinson’s disease, we can do more together to improve care and advance research toward a cure.
If you or someone you love is living with Parkinson’s, visit us online at www.parkinson.org to find access to research, care, and support. Every nine minutes, as someone else is diagnosed with this disease, someone new will turn to us for answers. We are here to help people with Parkinson’s live their best lives today until we find a cure.
John Lehr may be reached at jlehr@parkinson.org
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
https://parkinsonsnewstoday.com/2018/04/04/parkinsons-foundation-investing-research-create-better-lives-john-lehr-guest-column/
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