www.apdaparkinson.org

The American Parkinson Disease Association, Inc.
44 Years Later

The American Parkinson Disease Association (APDA) was officially recognized as a non for profit organization by the State of New York in 1964. APDA is unique in its dual mission of providing information, education and support directly to Parkinson’s patients and their caregivers, and also maintaining its place as a major contributor to pioneering Parkinson’s disease (PD) research.

Since its inception, APDA has been a funding partner in every scientific breakthrough in understanding the cause and progress towards a cure for PD. Included in that research was the pioneering work of Dr. Roger C. Duvoisin, a chairman of the APDA Scientific Advisory Board (SAB) that pinpointed the location of a gene responsible for PD at Robert Wood Johnson Medical School, New Jersey, in 1997.

APDA’s funding methodology is driven by its SAB, composed by 16 of the country’s leading physicians and scientists, experts in Parkinson’s disease and movement disorder research diagnosis and treatment. Now chaired by G. Frederick Wooten, MD, director of neurology at the University of Virginia Medical Center, the board includes representation from leading research and medical centers across the country including the UCLA Medical School, Emory University School of Medicine, the Mayo Clinic Jacksonville, the University of Wisconsin, the UMDNJ/ Robert Wood Johnson Medical Center, Boston University School of Medicine, Washington University, Johns Hopkins Medical School, the University of Alabama and the University of Chicago. The board composition is designed to represent expertise in all areas of PD research providing a knowledgeable panel to evaluate the more than 100 grant applications submitted for funding each year.

APDA support is offered to encourage research at all levels. Nine Centers for Advanced Research across the United States (Boston University School of Medicine, Emory University School of Medicine, UCLA School of Medicine, UMDNJ-Robert Wood Johnson Medical School, the University of Virginia Medical Center, the University of Pittsburgh, the University of Chicago, the University of Alabama, and Washington University Medical Center) receive a multi-year $125,000 annual award, and their scientific activity is reviewed and evaluated at the SAB meeting each spring.

The George C. Cotzias, MD Memorial Fellowship, named after a pathfinder in the pharmacological exploration of brain functions and in the treatment of PD with levodopa, is a three-year annual award of $80,000 to assist promising young neurologists in establishing careers in research, teaching and clinical services relevant to the cause, prevention, diagnosis and treatment of PD and related neurological movement disorders. It is considered APDA’s most prestigious individual award.

Established scientists affiliated with research or academic institutions and presently not working on PD research are eligible for the Roger C. Duvoisin, MD Research Grant. The grant carries a two-year, $80,000 annual award.

Other funding is available as research grants ($50,000 for one year) for young investigators to pursue research in PD; post-doctoral research fellowships ($35,000 for one year) available to post-doctoral scientists whose research training holds promise into new insights in pathophysiology, etiology and/or treatment of PD; and medical students summer fellowships designed to provide a stipend to medical students to perform supervised laboratory or clinical research in PD. The fellowship is $4,000.

At its meeting in May 2007, the SAB recommended more than $3.5 million in grants, which was unanimously approved by the executive committee of the national board of directors.

Equally important and unique among U.S. PD organizations is the APDA mission to support and educate the country’s 1.5 millions with Parkinson’s disease and their caregivers. Recognizing the devastating effects of the illness upon the patient and the family, a support program was launched to motivate patients in maximizing their strengths, minimizing impediments and achieving and maintaining their full potential for as long as possible.

Through a network of chapters, which raise awareness and funds; Information & Referral centers, each staffed with a medical director and a coordinator; and more than 800 support groups, APDA provides a comprehensive support and educational system for patients and caregivers. There are presently 56 chapters and 62 I&R centers located in major healthcare and academic facilities across the country, making it the largest grassroots PD organization in the United States.

In 2007, APDA the opened the country’s first full-time national young onset center to serve the unique challenges of young people faced with the progressive, degenerative disease. The center’s director is Julie Sacks, a clinical social worker with more than a decade of experience working with individuals of all ages and their families. The center is located in the Chicago, Illinois area and serves the entire country. Its Web site is www.youngparkinsons.org.

APDA also maintains a dedicated I&R center for U.S. Armed Forces veterans and their families. Located in Reno, Nevada, the center’s mission is to disseminate information about services available to veterans with PD in their home communities and to serve as a resource for information about government benefits available for Parkinson’s disease patients.

Education is a primary function of the organization and is provided through a quarterly newsletter, which is mailed to more than 200,000 people internationally. A series of publications includes multi-page booklets written by experts in specific fields such as symptoms and medications, support, physiotherapy, speech problems, and nutrition. Many of these educational materials have been translated into other languages and all are available free of charge. Educational supplements dealing with specific subjects related to PD are issued as the need may arise.

“Managing Parkinson’s – Straight Talk and Honest Hope,” is a DVD created for the newly diagnosed patient and his/her loved ones. Leading experts explain what PD is and how it is treated, how to deal with symptoms of the disease, some of the medications’ side effects and how to keep a positive outlook in dealing with it.

APDA works collaboratively with other US Parkinson’s organizations with similar objectives including the Parkinson’s Action Network, a national advocacy association based in the nation’s capital, PD Trials, a Web-based service to inform patients of existing clinical trials and to encourage participation and the Michael Fox Foundation to support a PD registry in the state of Nebraska.

Encouraging global cooperation, APDA was the co-sponsor, with the Italian Parkinson Disease Association, of the World Parkinson Disease Association, organized in November in 1998. Today, 26 national affiliates from six continents work cooperatively to disseminate the latest information about the progress of PD research, therapies, and all vital information about the disease within their countries. Dr. Paul Maestrone, APDA director of scientific and medical affairs of APDA and a WPDA founder, is the president of this association.

American Parkinson Disease Association
Parkinson Plaza - 135 Parkinson Avenue
Staten Island, NY 10305

Tel: 800-223-2732
Web: www.apdaparkinson.org