As we know Parkinson’s disease affects thousands of people. It can’t be cured, but medications can help control the symptoms.
That being said, people who suffer from it and their family members are often left with a feeling of loneliness, extreme anguish, and too many questions.
And, institutions like the Parkinson’s Foundation are the answer for many.
History of the Foundation
Let us start by stating that the Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure.
The Parkinson’s Foundation was formed by the merger of the National Parkinson Foundation (NPF) and the Parkinson’s Disease Foundation (PDF).
It is extremly importante to note that it was the first private Foundation in the U.S. created to advance research into the cause of and cure for Parkinson’s disease while helping those living with PD.
It all began in 1957. William Black, founder of a New York coffee and restaurant business, Chock Full O’Nuts, started the Foundation after learning that his close friend was diagnosed with Parkinson’s.
Mr. Black established the Parkinson’s Disease Foundation with his own money with the single gole of developing a research program aimed to find effective drug treatments for the disease.
On the other hand, the National Parkinson Foundation was founded by Jeanne C. Levey in Miami. Mrs. Levey and her husband who was diagnosed with Parkinson’s retired to Miami, FL, where Mrs. Levey set out to help people with PD.
After Mr. Black died in 1983, his widow Page Morton Black, became Chairman, advocating for the PD community for more than 30 years, until her resignation in 2012.
Over time, as it was expected, the Foundation expanded its scope to a nationwide level. In 1999, the organization completed a merger with the United Parkinson Foundation, a Chicago-based Parkinson’s organization.
In addition to its ongoing education and advocacy efforts, the Foundation still funds major research programs at Columbia University, Weill Cornell Medical Center, Rush University Medical Center and individual investigators and fellows around the world.
The promise
The fact is that someone that lives with Parkinson’s disease faces many challenges. That is thge reason why no individual or group can do it alone. And, the truth is that they shouldnt have to face it by themselves.
The amazing thing is that the Parkinson’s Foundation has created a community. They are an institution where people living with Parkinson’s, their families, doctors, scientists, and volunteers come together.
For over half a century, we’ve made tangible progress on all fronts, from the largest clinical study of Parkinson’s, which has significantly improved care, to breakthrough treatments.
In partnership with the entire Parkinson’s community, we are making a real difference in people’s lives. And we have the research, the data — and the stories — to prove it.
This is what happens when we all pull together as one global, determined and inspired movement. Better Lives. Together.
Diversity, Equity & Inclusion
The Parkinson’s Foundation is committed to removing barriers to care, making research inclusive, and ensuring that information and resources are accessible to every person living with Parkinson’s. We believe that everyone should have a fair opportunity to live a high-quality, long life with PD, regardless of their socioeconomic status, race or ethnicity, age, gender identity, sexual orientation, disability status, or geographic location.
The Foundation’s goal is to reach people with PD from populations of focus that have been adversely affected by health disparities, causing them to systemically experience decreased access to educational resources, care and research opportunities due to social, economic and environmental disadvantages.
In partnership with populations of focus, the Foundation is intentionally building on this commitment as an organization and a community so that all people with PD and their families have what they need to manage the disease and live the best quality of life.
The actions we take to ensure diversity, equity, and inclusion will always be in partnership with people with Parkinson’s, their care partners, and the broader PD community we are privileged to serve. We know that there is more that we can do to address these barriers as a Foundation and as a community and will share these actions as we move forward. Learn more about our commitment to diversity, equity and inclusion.
The Parkinson’s Foundation logo in the shape of an uppercase letter “P”, not only stands for Parkinson’s—it also suggests a speech bubble reflecting the many voices in the global Parkinson’s community that contribute to our mission.
In 2016, the National Parkinson Foundation merged with the Parkinson’s Disease Foundation to form the Parkinson’s Foundation. Today, with offices in New York City and Miami, the Parkinson’s Foundation works towards making life better for people with Parkinson’s disease by improving care and advancing research toward a cure.
In 2017, Parkinson’s Foundation merged with the Melvin Yahr International Parkinson’s Disease Foundation. Melvin D. Yahr, MD, was a pioneer in PD research whose work led to the adoption of levodopa as a revolutionary new PD treatment.
He served as Professor of Neurology and Associate Dean of Columbia University’s medical school. With funding from William Black to construct a new research building at Columbia, Dr. Yahr was appointed head of Columbia’s Parkinson’s research team and Scientific Director of the Parkinson’s Disease Foundation, which was founded in 1957 by Mr. Black.
One of Dr. Yahr’s major career achievements was the development of the Hoehn-Yahr scale in 1967, the first widely used PD rating scale that is still in use today. He published more than 300 scientific papers and helped found the specialty of movement disorders.
In addition to his groundbreaking research, Dr. Yahr also served as a champion of young neurologists, particularly women and under-represented groups. The Parkinson’s Foundation honors Dr. Yahr’s legacy by offering the “Melvin Yahr Early Career Award in Movement Disorders Research ” to promote leadership diversity in Parkinson’s research and to prepare young neurologists for a career in clinical research. The two-year grant is awarded to one neurology fellow every other year with the intent to fund individuals who have been underrepresented in Parkinson’s research at academic institutions.
Understanding
Scientists believe a combination of genetic and environmental factors are the cause of Parkinson’s disease (PD). PD is an extremely diverse disorder. While no two people experience Parkinson’s the same way, there are some commonalities.
Parkinson’s affects about one million people in the U.S. and 10 million worldwide. The main finding in brains of people with PD is loss of dopaminergic neurons (these regulate movement and play a key role in Parkinson’s progression) in an area of the brain known as the substantia nigra.
It is important to note that genetics cause about 10 to 15% of all Parkinson’s. Over the years, scientists have studied DNA from people with Parkinson’s, comparing their genes. They discovered dozens of gene mutations linked to Parkinson’s.
But, research has shown that some environmental exposures may lower the risk of PD, while others may increase it. The interactions between genes and the environment can be quite complex.
Environmental risk factors associated with PD include head injury, area of residence, exposure to pesticides and more. Learn how environmental factors play a role in PD.
Although several genetic mutations have been identified to be associated with a higher risk of developing Parkinson’s disease (PD) most people do not have these genetic variations.
On the other hand, even though pesticides and head traumas are associated with PD, most people do not have any obvious exposure to these environmental factors.
Parkinson’s is caused by a combination of genes, environmental and lifestyle influences. The interaction of all three components determines if someone will develop Parkinson’s. Parkinson’s-specific research is critical to better understanding how these components interact to cause PD and how to prevent it.
A momentary closure
At this time there is no cure for Parkinson’s, but there are many things you can do to positively influence the course of the disease and improve your quality of life. Maintaining a positive approach seems to slow the progression of symptoms and helps you maintain control.
Parkinson’s is life-altering, but not life-threatening. Some of the more advanced symptoms may make you more vulnerable to infections, but for most people, Parkinson’s will not significantly reduce life expectancy.
That is all. The primary risk factor for PD is age. Making an accurate diagnosis of Parkinson’s, particularly in its early stages, can be difficult.
Parkinson’s disease (PD) is a “clinical” diagnosis. This means that an individual’s history, symptoms, and physical exam are used to make the diagnosis. There is no specific lab or imaging test that can diagnose PD.
The people they serve deserve nothing less than the highest level of support based on validated research and deep encouragement grounded in reality. Their donors and volunteers need to know that the foundation is 100% accountable. This is why they focus on verifiable outcomes, not vague promises.
