The American Parkinson Disease Association—Information and Referral Center Coordinators—Making the Connection
The American Parkinson Disease Association—Information and Referral Center Coordinators—Making the Connection
US Neurology, 2009;5(1):22-4
Abstract
People diagnosed with Parkinson’s disease (PD) are presented with unique challenges. The American Parkinson Disease Association, Inc. (APDA) was founded in 1961 “to ease the burden, to find the cure” for PD. Headquartered in New York, the organization has a long-standing history of providing grassroots support for those dealing with PD. In 1974, APDA established the first local Information and Referral (I&R) Centers. APDA currently funds the operation of 61 I&R Centers across the continental US. To ensure the vibrant, day-to-day operation of these Centers, the APDA has a dedicated cadre of I&R Center coordinators who help ‘ease the burden’ of PD. These coordinators come from a wide variety of professional backgrounds, particularly the fields of nursing and social work. Although coordinator qualifications are diverse, universal to all is a passion to offer patients, families, and the general community a better understanding of PD, as well as the skills to successfully manage the formidable challenges presented by the disease.
Keywords
The American Parkinson Disease Association (APDA), Parkinson’s disease education and support, Information & Referral (I&R) Centers, APDA coordinators, coordinator mentoring
Disclosure and Acknowledgments: The authors would like to thank the American Parkinson Disease Association and Dr Paul Maestrone and Michele Popadynec, RN, for their ongoing support of the national network of Information and Referral Center Coordinators.
Received: June 1, 2009 Accepted: July 17, 2009
Correspondence: Donna Diaz, RN, MS, Hospital of Saint Raphael, 1450 Chapel Street, New Haven, CT 06518. E: ddiaz@srhs.org; Cathi Thomas, Boston University Medical Center, 72 E Concord Street, C-3, Boston, MA 02118. E: neurocat@bu.edu
People diagnosed with Parkinson’s disease (PD) are presented with unique challenges. It requires effort and tenacity to understand and manage a chronic, progressive condition. Those living with PD have important questions to be answered and concerns to be addressed at various points on their journey. For instance, it is necessary for individuals to know where to gather information about their illness. In addition, they require effective tools to access the healthcare system in order to obtain sound medical treatment and care. Those afflicted with PD also need to understand how the disease will affect family, work, and social relationships. Also, these individuals often want to be aware of the impact PD will have on their life plans.
The American Parkinson Disease Association, Inc. (APDA) was founded in 1961 “to ease the burden, to find the cure” for PD. Headquartered in New York, the organization focuses its energies on research, patient education and support, and public awareness activities. Because of APDA’s longstanding commitment to provide a ‘grassroots’ presence to those dealing with PD, whether as patients, family members, or healthcare providers, there evolved a strong national network of support groups and Chapters run by devoted volunteers. To further complement its outreach, APDA developed the concept of Information and Referral (I&R) Centers. In 1974, the first of these Centers was opened in New York. APDA currently provides funding for the operation of 61 of these across the continental US. The Centers are strategically located throughout the country and hosted by academic medical centers, community hospitals, neurology practices, and other appropriate agencies. Physicians experienced in the delivery of care to those with PD serve as medical directors. In addition, in order to ensure the vibrant, day-to-day operation of a Center, APDA has a dedicated cadre of I&R Center coordinators who help ‘ease the burden’ of PD.
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