![]() Logo | |
Founded | 1957 |
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Founder | Jeanne C. Levey; William Black |
13-1866796 | |
Legal status | 501(c)(3) Non-profit |
Focus | Parkinson's disease research and resources [1] |
Headquarters | Miami, Florida; New York City, New York |
J. Gordon Beckham, Jr. | |
John L. Lehr | |
Chief Scientific Officer | James Beck, PhD |
Website | parkinson |
The Parkinson's Foundation is a national organization that funds research and provides educational resources to Parkinson's disease patients and caregivers. The Parkinson's Foundation was established in 2016 through the merger of the National Parkinson Foundation and the Parkinson's Disease Foundation. The Parkinson's Foundation has headquarters in Miami and New York City, in addition to 17 chapters throughout the United States. [2]
The organizations that merged to create the Parkinson's Foundation in 2016 were both created in 1957. The National Parkinson Foundation was founded by Jeanne C. Levey in Miami and the Parkinson's Disease Foundation was founded by William Black in New York. [3] [4] [5]
The founding organizations funded researchers such as Melvin Yahr and H. Houston Merritt. [6] [7]
In 1965, Parkinson's Foundation funding led to the establishment of the Columbia University Medical Center's basic science laboratories in the William Black Building. [7] [6]
In 1969, Yahr and Parkinson's Foundation colleagues published results of the first double-blind trial of levodopa. [8]
The Parkinson's Foundation began funding summer fellowships for medical students in the 1970s.
In 1971, Roger C. Duvoisin developed Columbia University's Rating Scale, the forerunner to the Unified Parkinson Disease Rating Scale. [9] In the same year, the Parkinson's Foundation and Merck, Inc. funded Dr. Yahr's double-blind clinical trial of carbidopa/levodopa (Sinemet), which remains the gold standard therapy for Parkinson's disease. [10]
In the 1980s, the Parkinson's Foundation began investing in movement disorder training fellowships at Columbia University and Rush University.
In 1985, the Parkinson's Foundation established its Centers of Excellence Network, which today consists of 51 designated medical centers worldwide that deliver care to more than 196,000 Parkinson's patients. [11]
With funding from the Parkinson's Foundation, Duvoisin and his team described the Contursi kindred, the first description of inherited Parkinson's, in 1990. [12]
In 1994, the Parkinson's Foundation joined several other organizations to create a scientific research fundraiser, the Parkinson's Unity Walk. [13]
In 2002, a research team at Columbia University funded by the Parkinson's Foundation found evidence that Parkinson's requires the alpha-synuclein protein, a now well-known hallmark of the disease. [14]
In 2011, the Parkinson's Foundation launched Moving Day, its signature fundraising walk for Parkinson's. [15]
In 2019, the Parkinson's Foundation launched PD GENEration, a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for Parkinson's patients. [16]
In 2022, the Parkinson's Foundation partnered with Parkinson's UK to establish the Venture Philanthropy Fund, which invests money into Parkinson's disease research. [17]
The Parkinson's Outcomes Project was started in 2009 and as of 2022 remains the largest-ever clinical study of Parkinson's disease. The longitudinal study is executed through the Parkinson's Foundation Global Care Network and monitors the symptoms and quality of life of Parkinson's patients to determine best practices in healthcare and establish standard treatment protocols. [19]
The Parkinson's Outcomes Project found that depression and anxiety are the number one factors impacting the overall health of Parkinson's patients. [20] The study also found that increasing physical activity to at least 2.5 hours a week can slow decline in quality of life. [21]
PD GENEration: Mapping the Future of Parkinson's Disease is a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for Parkinson's patients. [23]
In 2022, the Parkinson's Foundation established the Venture Philanthropy Fund. This fund advances Parkinson's disease research by investing money into the Parkinson's Virtual Biotech Fund, the drug development arm of Parkinson's UK. [17]
The Parkinson's Foundation Global Care Network is a healthcare network that provides care to Parkinson's patients. [11] The network is composed of Centers of Excellence and Comprehensive Care Centers.
A Parkinson's Foundation Center of Excellence is a medical center with a specialized team of neurologists, movement disorder specialists, physical therapists, occupational therapists, mental health professionals and others who are up to date on the latest Parkinson's medications, therapies and research. [24] [25] The Foundation has designated 60 medical centers around the world as part of its Global Care Network. [26]
Parkinson's Foundation Comprehensive Care Centers are medical facilities with multi-disciplinary teams providing Parkinson's care. [26] Each center is required to meet care, professional training, community education and outreach criteria.
The Parkinson's Foundation is affiliated with the following institutions:
The Parkinson's Foundation has designated four institutions as research centers: Columbia University Medical Center, the University of Florida in collaboration with Emory University, the University of Michigan in collaboration with the University of Texas Southwestern Medical Center, and the Yale School of Medicine. [27] These institutions receive $2 million in Parkinson's Foundation funding over four years to further research that advances the understanding and treatment of Parkinson's. [28]
Since 1957, the Parkinson's Foundation has invested more than $425 million in Parkinson's disease research and clinical care. [29]
The Parkinson's Foundation Research Center designation provides funding for team science at institutions working on a thematic area of Parkinson's disease. [28]
The Institutional Movement Disorders Fellowship provides an institution with the funds to support the two-year long training of an incoming movement disorders fellow. [30]
George G. Kaufman Impact Awards fund projects that are in need of support to impact the Parkinson's community. [31]
Stanley Fahn Junior Faculty Awards provide funding to early career scientists to further their Parkinson's disease research. [32]
Conference Awards support the gathering of experts working to address unsolved clinical or basic science problems relevant to Parkinson's disease. [33]
The Launch Award is an award for postdoctoral researchers who are transitioning to independent research careers in Parkinson's. [34]
Postdoctoral Fellowships are two-year fellowships for scientists who have recently completed their Ph.D. training or neurology residencies. [31]
Visiting Scholar Awards support the travel and housing of scholars while visiting host laboratories that conduct Parkinson's research. [34]
Summer Student Fellowships provide students interested in Parkinson's disease with an opportunity to conduct research through 10 weeks of clinical or laboratory work. [34]
The Melvin Yahr Early Career Award in Movement Disorders Research supports neurologists after residency. [35]
Partnership Awards are collaborative partnerships supporting clinician-scientist training, patient-oriented Parkinson's research and medical student Parkinson's studies. [34]
The Nurse Faculty Award is seed grant funding intended to support Edmond J. Safra Visiting Nurse Scholars. [36]
The Physical Therapy Faculty Award is seed grant funding intended to support Physical Therapy Faculty alumni. [36]
The Parkinson's Foundation partners with The Michael J. Fox Foundation to host the Parkinson's Policy Forum. [37] The event brings together community members and researchers for research updates, policy briefings, advocacy trainings and networking opportunities.
The People with Parkinson's Advisory Council is a patient leadership group. The council was created in 2006 and is composed of people with Parkinson's disease and caregivers who serve as advisors to the foundation. [38]
The Parkinson's Foundation Research Advocates program trains Parkinson's patients and their caregivers to collaborate with Parkinson's disease scientists in research. [39] [40] The program was established in 2008 and has trained more than 350 participants. [41]
The Parkinson's Foundation Helpline is staffed by nurses, social workers and health educators. [42] PD Conversations is an online support network that allows individuals to ask experts Parkinson's questions. [43]
The Newly Diagnosed Kit includes information and resources for individuals who have recently been diagnosed with Parkinson's disease. [44]
The Aware in Care hospitalization kit provides information and resources to help Parkinson's patients stay safe during hospital visits. [45]
The series of online courses provides Parkinson's caregivers with information and tools to help care for someone living with Parkinson's disease. [46]
The webinars highlight the latest Parkinson's disease research and updates from experts in the field. [47]
The virtual educational and wellness program hosts weekly online events that provide at-home resources to Parkinson's patients and caregivers. Events include Mindfulness Mondays, Wellness Wednesdays and Fitness Fridays. [48]
The podcast series, hosted by Dan Keller, PhD, interviews Parkinson's experts to highlight treatments and techniques for living with Parkinson's disease, as well as research updates in the field. [49]
The grants support education and outreach programs that address unmet needs in the Parkinson's community. [50] Since 2011, the Parkinson's Foundation has invested more than $9.4 million in community-based programs. [51]
Moving Day, a Walk for Parkinson's, is the main fundraising event for the Parkinson's Foundation. Moving Day was started in 2011 and hosts events in cities across the United States. [52] The walk has raised over $40 million to advance Parkinson's disease research and improve care. [53]
Parkinson's Champions is a community fundraising and endurance program. [54] Individuals plan their own events or participate in endurance races to raise funds and awareness for Parkinson's disease. The program has raised nearly $12 million. [55]
Revolution is an annual indoor cycling event that raises funds to generate awareness and advance the mission of the Parkinson's Foundation. [56] Revolution was started in 2020 and events take place in cities across the United States. [57] The cycling event has raised over $565,000 to advance Parkinson's disease research and improve care. [58]
John L. Lehr has been the chief executive officer since 2017. [59] J. Gordon Beckham, Jr. serves as the chair of the Foundation's board of directors. [60]
In August 2016, PDF and NPF merged to form the Parkinson's Foundation. [61] [62] [63]
In October 2017, the Parkinson's Foundation acquired the Melvin Yahr International Parkinson's Disease Foundation. [6]
In January 2020, the Parkinson's Foundation partnered with Zelira Therapeutics to study the benefits of medical cannabis in PD patients. [64]
In May 2020, the Parkinson's Foundation partnered with the U.S. Department of Veteran Affairs to increase access to information about Parkinson's disease. [65] Veterans who develop Parkinson's disease can be associated with exposure to Agent Orange or other herbicides during military service. [66]
Dyskinesia refers to a category of movement disorders that are characterized by involuntary muscle movements, including movements similar to tics or chorea and diminished voluntary movements. Dyskinesia can be anything from a slight tremor of the hands to an uncontrollable movement of the upper body or lower extremities. Discoordination can also occur internally especially with the respiratory muscles and it often goes unrecognized. Dyskinesia is a symptom of several medical disorders that are distinguished by their underlying causes.
Thalamotomy is a surgical procedure in which a functional lesion is made into the thalamus to improve the overall brain function in patients. First introduced in the 1950s, it is primarily effective for tremors such as those associated with Parkinson's disease, where a selected portion of the thalamus is surgically destroyed (ablated). Neurosurgeons use specialized equipment to precisely locate an area of the thalamus, usually choosing to work on only one side. Bilateral procedures are poorly tolerated because of increased complications and risk, including vision and speech problems. The positive effects on tremors are immediate. Other less destructive procedures are sometimes preferred, such as subthalamic deep brain stimulation, since this procedure can also improve tremors and other symptoms of PD.
In the management of Parkinson's disease, due to the chronic nature of Parkinson's disease (PD), a broad-based program is needed that includes patient and family education, support-group services, general wellness maintenance, exercise, and nutrition. At present, no cure for the disease is known, but medications or surgery can provide relief from the symptoms.
A catechol-O-methyltransferase inhibitor is a drug that inhibits the enzyme catechol-O-methyltransferase. This enzyme methylates catecholamines such as dopamine, norepinephrine and epinephrine. It also methylates levodopa. COMT inhibitors are indicated for the treatment of Parkinson's disease in combination with levodopa and an aromatic L-amino acid decarboxylase inhibitor. The therapeutic benefit of using a COMT inhibitor is based on its ability to prevent the methylation of levodopa to 3-O-methyldopa, thus increasing the bioavailability of levodopa. COMT inhibitors significantly decrease off time in people with Parkinson's disease also taking carbidopa/levodopa.
Istradefylline, sold under the brand name Nourianz, is a medication used as an add-on treatment to levodopa/carbidopa in adults with Parkinson's disease (PD) experiencing "off" episodes. Istradefylline reduces "off" periods resulting from long-term treatment with the antiparkinson drug levodopa. An "off" episode is a time when a patient's medications are not working well, causing an increase in PD symptoms, such as tremor and difficulty walking.
Dopamine dysregulation syndrome (DDS) is a dysfunction of the reward system observed in some individuals taking dopaminergic medications for an extended length of time. It is characterized by severely disinhibited patterns of behavior, leading to problems such as addiction to the offending medication, gambling addiction, or compulsive sexual behavior, along with a general orientation towards immediate gratification. It typically occurs in people with Parkinson's disease (PD) or restless legs syndrome (RLS) who have taken dopamine agonist medications for an extended period of time.
Parkinson's disease (PD), or simply Parkinson's, is a neurodegenerative disease primarily of the central nervous system, affecting both motor and non-motor systems. Symptoms typically develop gradually, with non-motor issues becoming more prevalent as the disease progresses. Common motor symptoms include tremors, bradykinesia, rigidity, and balance difficulties, collectively termed parkinsonism. In later stages, Parkinson's disease dementia, falls, and neuropsychiatric problems such as sleep abnormalities, psychosis, mood swings, or behavioral changes may arise.
Befiradol is an experimental drug being studied for the treatment of levodopa-induced dyskinesia. It is a potent and selective 5-HT1A receptor full agonist.
The research in Parkinson's disease refers to any study intended to help answer questions about etiology, diagnostic approaches or new treatments of Parkinson's disease (PD) by studying their effects on human subjects. Clinical trials are designed and conducted by scientists and medical experts, who invite participants to undergo testing new vaccines, therapies, or treatments.
Levodopa-induced dyskinesia (LID) is a form of dyskinesia associated with levodopa (l-DOPA), used to treat Parkinson's disease. It often involves hyperkinetic movements, including chorea, dystonia, and athetosis.
The Pacific Udall Center was established in 2009 as a new Morris K. Udall Center of Excellence for Parkinson's Disease Research. It is one of nine Udall Centers across the U.S. that honor former Utah Congressman Morris Udall with a "multidisciplinary research approach to elucidate the fundamental causes of PD [Parkinson's Disease] as well as to improve the diagnosis and treatment of patients with Parkinson's and related neurodegenerative disorders." The Pacific Udall Center is a collaboration among Stanford University, the University of Washington, the VA Puget Sound Health Care System, Oregon Health & Science University, and the Portland VA Medical Center. It is funded by a grant from the National Institute of Neurological Disorders and Stroke.
Parkinsonian gait is the type of gait exhibited by patients with Parkinson's disease (PD). It is often described by people with Parkinson's as feeling like being stuck in place, when initiating a step or turning, and can increase the risk of falling. This disorder is caused by a deficiency of dopamine in the basal ganglia circuit leading to motor deficits. Gait is one of the most affected motor characteristics of this disorder although symptoms of Parkinson's disease are varied.
The Lee Silverman Voice Treatment – LOUD is a treatment for speech disorders associated with Parkinson's disease (PD). It focuses on increasing vocal loudness and is delivered by a speech therapist in sixteen one-hour sessions spread over four weeks. A derivative of this treatment, known as LSVT BIG, is used in treating movement aspects of Parkinson's disease.
The history of Parkinson's disease expands from 1817, when British apothecary James Parkinson published An Essay on the Shaking Palsy, to modern times. Before Parkinson's descriptions, others had already described features of the disease that would bear his name, while the 20th century greatly improved knowledge of the disease and its treatments. PD was then known as paralysis agitans. The term "Parkinson's disease" was coined in 1865 by William Sanders and later popularized by French neurologist Jean-Martin Charcot.
David Charles is an American neurologist, professor and vice-chair of neurology, and the medical director of Telehealth at Vanderbilt University Medical Center.
Mavoglurant (developmental code name AFQ-056) is an experimental drug candidate for the treatment of fragile X syndrome and other conditions. It exerts its effect as an antagonist of the metabotropic glutamate receptor 5 (mGluR5).
Alice M. Lazzarini is a scientist, author and researcher on neurogenetic disorders, including Huntington's disease and Parkinson's disease. She is an assistant professor of Neurology at Rutgers Robert Wood Johnson Medical School, where her work helped establish the genetic basis of Parkinson's. Later in life, she was diagnosed with Parkinson's—the very disease she had spent decades researching.
Diane G. Cook is a Parkinson's disease patient advocate, especially well known for the use of the science of self-efficacy to help newly diagnosed patients with Parkinson's. She accomplishes this through her roles as a senior patient advocate for the ProjectSpark Foundation. Cook also is a present and past clinical investigator on a number of clinical trials, and a speaker, writer and presenter at numerous local, state, national, and international forums focused on Parkinson's. She was diagnosed with Parkinson's disease in 2008.
Opicapone, sold under the brand name Ongentys, is a medication which is administered together with levodopa in people with Parkinson's disease. Opicapone is a catechol-O-methyltransferase (COMT) inhibitor.
The Shake It Up Australia Foundation (SIUAF) is an Australian non-for-profit foundation founded in 2011 by Clyde and Greg Campbell. It is partnered with the Michael J. Fox Foundation (MJFF) to achieve the foundations primary aims of "promoting and funding Parkinson's disease research in Australia to slow, stop and cure the disease". Together MJFF and SIUAF are the largest non-government funders of Parkinson's research across multiple institutes in Australia. Since its founding, the foundation has co-founded 38 Parkinson's research projects across 12 institutes to the value of over $10.8 million. The foundation's funding model ensures that 100% of proceeds goes towards Parkinson's research in Australia. This is possible due to the founding directors covering all overhead costs and expenses. In January 2019, Shake It Up are one of the partner organisation in the Australian Parkinson's Mission which was awarded a $30 million-dollar grant to test repurposed drugs in clinical trials.