The Final State of the Union
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Deborah W. Brooks is being honored as a Champion of Change in the Fight Against Parkinson's Disease.
When I co-founded The Michael J. Fox Foundation for Parkinson's Research (MJFF) with Michael in 2000, we had one goal: accelerate new treatments and, ultimately, a cure for Parkinson’s disease (PD). We put patients front and center and reached across academia, industries and government. We brought together researchers, technology and clinical study volunteers. And today, there’s an unprecedented level of patient engagement with research efforts, the drug development pipeline is the most robust ever and a cure is that much closer.
More than 1 million people in the United States have Parkinson’s, the second most common brain disease after Alzheimer’s. In 2015, around 60,000 more Americans will be diagnosed with PD, and this number will only increase as the global population ages. Our urgency is shared with these patients and families. We’re honored to include fellow Champion Steven DeWitte in our Patient Council. Their role as advisors on patient priorities and outreach to increase clinical trial participation is invaluable.
We believe that a patient-centric vision and opportunities to take strategic risks are key to progress in finding a cure. So MJFF-funded scientists are studying targets such as the protein alpha-synuclein, which clumps in the brain cells of people with Parkinson’s and has a genetic link to PD. In addition to examining its role in Parkinson’s genesis, alpha-synuclein is the focus of two vaccine approaches in disease-modifying clinical trials.
We’re also investigating mutations in the LRRK2 gene, the greatest known genetic contributor to PD, to advance research in disease onset and progression. Last year our landmark biomarker study, the Parkinson's Progression Markers Initiative, began enrolling people with either a LRRK2 or alpha-synucein genetic mutation.
MJFF is also making strides in meeting the needs of those living with Parkinson’s day to day. Available drug therapies don’t treat all symptoms and can wear off before it’s time to take the next dose. So we invest in research that we believe has the greatest potential to help patients maintain their functionality and comfort longer. In the last 18 months alone, more than a dozen projects with MJFF early-stage investment have garnered promising results leading to additional funding; a number are in clinical testing. The U.S. Food and Drug Administration approved three new drugs for Parkinson’s symptoms in 2014; significant for any medical indication.
Those taking part in research allow these milestones to happen, and MJFF is steadfast in supporting them with up-to-date engagement platforms. We’re working with tech leaders like Intel and Apple to leverage devices that conveniently collect and measure data. We’ve launched Fox Insight, a data-collection study that also serves as a hub to link personal and device data from other studies, from both those with and without PD. Our web-based Fox Trial Finder tool matches people with the clinical trials that need them, both in person and online. The rewards will ripple beyond these individuals to the entire PD community and to our nation.
I am constantly inspired by the commitment the tens of thousands of patients and their families who fund our high-risk, high-impact work, and who participate in clinical research. Only through studying people with and without PD will we find a cure. I am often reminded of Michael’s decision to take action, knowing each person who follows his lead contributes to a cure. While I’m honored to be named a White House Champion of Change, I believe they are the true heroes of this work.
I hope you, too, are inspired to learn more about getting involved. Only together will we reach the day when no one will have to live with Parkinson’s disease.
Deborah W. Brooks is co-founder and executive vice chairman of The Michael J. Fox Foundation for Parkinson's Research (MJFF). MJFF is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today.
