Further Parkinson's Disease Research
The Michael J. Fox Foundation (MJFF) advocates for polices that accelerate the search for a cure and further the development of new treatments for those living with Parkinson's disease (PD) today. Legislation that supports robust federal research funding and broad access to scientific resources is key to achieving this goal.
Read more on our current policy initiatives in this area:
Parkinson's Research Funding
The federal government is a major funder of Parkinson's research, supporting essential investigations that increase disease understanding and bring us closer to a cure. Today, we have the best pipeline for new treatments that we've seen in decades, and federal investments have helped contribute to this. To ensure this momentum continues, the federal agencies and programs involved in Parkinson's research must continue to receive robust and reliable funding.
The National Institutes of Health
The National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services, is the nation's medical research agency and the largest public funder of PD research, supporting approximately $169 million in Parkinson's research in FY 2017.
Basic research conducted through the NIH is a critical driver of Parkinson's breakthroughs. NIH-funded scientists first linked the alpha-synuclein gene to PD in 1997, which later led to the discovery of Lewy bodies in the brain. Based on the foundation laid by those NIH researchers and the work that followed, several approaches targeting the alpha-synuclein protein are now in clinical trials. This is just one example of the many contributions the NIH has made to the field.
The Michael J. Fox Foundation and Parkinson's community advocates have pushed for increased NIH funding for many years. While the NIH budget has been raised slightly, the agency's funding has not kept pace with medical inflation. In 2016, NIH was only able to fund 12 percent of investigator-initiated grants, leaving an untold number of possibilities undiscovered.
Patients and the medical community deserve stable and consistent NIH funding that allows for research progress and supports innovative projects that bring us closer to cures. Read more about MJFF's efforts to raise the NIH budget.
Department of Defense Parkinson's Research Program
The Parkinson's Research Program (PRP) at the Department of Defense (DoD) was created by Congress in 1997 and has funded over $400 million in Parkinson's research. It is the only government-funded
research program specifically dedicated to PD.
Military service members often are exposed to toxins and other external stressors, such as traumatic brain injury, which research has correlated with an increased risk of Parkinson's. Understanding how these exposures occur, how many people are diagnosed with PD afterwards and how these conditions may be prevented, treated or cured will allow the DoD to better protect the estimated 80,000 veterans living with Parkinson's today, as well as future military generations who may be affected by PD.
In recent years, PRP funding has significantly decreased (from $25 million in Fiscal Year 2010 to $16 million in Fiscal Year 2017). The Michael J. Fox Foundation and Parkinson's community advocates are urging Congress to reinstate funding at previous budget levels to ensure scientific progress can continue.
Additionally, the Senate repeatedly has tried to pass provisions that would severely restrict the PRP and other medical research at the DoD. Learn how patients, care partners and others took action to prevent this language from becoming law.
Parkinson's Data Collection
For many years, our community has advocated for the collection of Parkinson's disease data. While there are rough estimates of the number of people diagnosed with PD, we do not currently have accurate and comprehensive information on how many people are living with the disease, who they are and where they are located. This lack of core knowledge makes it challenging to assess potential environmental triggers and other patterns of disease. It also slows Parkinson's research and drug development and makes it difficult to ensure health care services are allocated properly.
After much work, we moved one step closer to this goal in December 2016 when the 21st Century Cures Act was signed into law. This bill authorizes the creation of the National Neurological Conditions Surveillance System at the Centers for Disease Control and Prevention (CDC) to collect demographic information on people living with neurological diseases.
This system will:
- Provide scientists with comprehensive data to help refine and target their research,
- Build a foundation for understanding many factors, such as clusters of diagnoses in certain geographic regions, differences in the number of men and women diagnosed with neurological diseases, and variability in health care practices among patients, and
- Assess the needs of those with neurological diseases on a deeper level, thereby allowing for future health care planning.
The Michael J. Fox Foundation and Parkinson's community advocates are working to ensure the database it fully funded by Congress so that it can be properly implemented. In addition, as the Cures bill does not specify which diseases the system will track, MJFF is collaborating with the CDC to push for the inclusion of Parkinson's.
Ethical and responsible access to a wide range of human tissues, including fetal tissue and adult, embryonic and induced pluripotent stem cells, is crucial to the discovery of new therapies across many diseases, including Parkinson's. The Michael J. Fox Foundation believes public policy regulating taxpayer-funded research has an obligation to promote research freedom. We advocate for policies that support access to a wide range of scientific resources to speed urgently needed breakthroughs.
Additionally, MJFF advocates for the removal of unnecessary barriers that impede safe and legal access to marijuana for medical research purposes. At this time, more investigations are needed to better understand if cannabis could help in treating Parkinson's disease. But restrictions, including marijuana's status as a Schedule I controlled substance, have obstructed robust research into its potential therapeutic benefits for PD. Easing these barriers to research will allow scientists to determine if medical marijuana may safely and effectively help people manage the symptoms of Parkinson's.