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Neurodegenerative Diseases Parkinson’s Disease
The American Parkinson Disease Association—
Information and Referral Center Coordinators—Making the Connection
Donna Packo Diaz, RN, MS
1
and Cathi A Thomas, RN, MS
2
1. Department of Community Health and Outreach, Hospital of Saint Raphael, New Haven;
2. Department of Neurology, Boston University School of Medicine
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 provides funding for the operation of 61 of these across the continental US.
unique challenges. It requires effort and tenacity to understand and The Centers are strategically located throughout the country and hosted
manage a chronic, progressive condition. Those living with PD have by academic medical centers, community hospitals, neurology practices,
important questions to be answered and concerns to be addressed at and other appropriate agencies. Physicians experienced in the delivery of
various points on their journey. For instance, it is necessary for care to those with PD serve as medical directors. In addition, in order to
individuals to know where to gather information about their illness. In ensure the vibrant, day-to-day operation of a Center, APDA has a dedicated
addition, they require effective tools to access the healthcare system cadre of I&R Center coordinators who help ‘ease the burden’ of PD.
in order to obtain sound medical treatment and care. Those afflicted
with PD also need to understand how the disease will affect family, Who Are These Coordinators?
work, and social relationships. Also, these individuals often want to be APDA coordinators come from a wide variety of professional
aware of the impact PD will have on their life plans. backgrounds, particularly the fields of nursing and social work. Others
are rehabilitation specialists in physical, occupational, and speech/
The American Parkinson Disease Association, Inc. (APDA) was founded in language therapy. Many coordinators present with impressive expertise
1961 “to ease the burden, to find the cure” for PD. Headquartered in New in areas such as health psychology, finance, management, and public
York, the organization focuses its energies on research, patient education relations. There are also those who come with experience in academics,
and support, and public awareness activities. Because of APDA’s long- research, law, and community service.
standing commitment to provide a ‘grassroots’ presence to those dealing
with PD, whether as patients, family members, or healthcare providers, Although coordinator qualifications are diverse, what is universal to all
there evolved a strong national network of support groups and Chapters is a passion to offer patients, families, and the general community a
run by devoted volunteers. To further complement its outreach, APDA better understanding of PD. Ultimately, coordinators hope to empower
developed the concept of Information and Referral (I&R) Centers. In 1974, the PD population by providing them with the skills to successfully
the first of these Centers was opened in New York. APDA currently manage the formidable challenges presented by the disease.
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22 © TOUCH BRIEFINGS 2009
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