MIAMI — The National Parkinson Foundation (NPF) announced today that their toll-free Helpline, 1-800-4PD-INFO, has achieved a major milestone: the Helpline reached its 50,000th caller. The lifesaving NPF Helpline, launched in 2010, is staffed by a team of patient-focused nurses, social workers and therapists who answer calls about Parkinson’s disease (PD) in English and in Spanish Monday through Friday from 9 a.m. to 5 p.m. EST*.
*[As of September 2018, the helpline has officially extended hours until 8 p.m. ET]
“NPF’s Helpline links our groundbreaking research to improve the lives of people with Parkinson’s today directly with the community we serve,” said John Kozyak, NPF’s Chairman of the Board. “I know this first hand because the Helpline has made a difference in the life of my mother, who is living with Parkinson’s. Research is how we make a lasting impact, but it makes me proud every time I refer a person to the Helpline because I know we will improve that person’s life right away.” (Continue reading below)
“We’re more than just an information line. We truly care about the people we serve and that’s the key to our success,” said Adolfo Diaz, NPF’s Director of Patient Services who manages the Helpline. “Whether you have yet to receive a diagnosis, are recently diagnosed with Parkinson’s, or caring for a family member with the disease, we are here to help you understand your condition, your care, and the latest research on how patients can live their best lives with Parkinson’s. We spend as much as 45 minutes on calls with those who have been recently diagnosed – more than three times the average – because we can really make a difference.”
NPF’s Helpline Specialists help callers locate resources in their area, as well as send a customized informational packet after the call. The NPF packets arm people with Parkinson’s and their families with helpful information on preparing for an appointment with their general practitioner or A neurologist with extra training (usually a one- or two-year fellowship) in Parkinson’s and other movement disorders.. People with Parkinson’s disease, their care partners and families are invited to call to receive emotional support and referrals to health professionals and community resources. A wide variety of helpful NPF publications and the Aware in Care kit are also available for order through the Helpline.
“Helpline callers help educate us, as well. The first news of a Parkinson’s medication shortage came to us through the Helpline, and we were able to find the information we needed to help people with Parkinson’s get the medicine they needed. We also have learned about the impact of the Medicare therapy caps, challenges with newly-approved medications, and other issues that have made NPF a better champion for the needs of the Parkinson’s community,” said Peter Schmidt, PhD, NPF’s Senior Vice President and Chief Mission Officer.
NPF also has an online video series called, “Ask the Helpline,” where our PD Specialists answer the most frequently asked questions including: why exercise is important, what role a movement disorder specialist plays and how the role of caregiver changes over time.
The NPF Helpline is made possible through the support of generous donors in the Parkinson’s community. People with questions about PD may also e-mail the NPF Helpline at firstname.lastname@example.org.
About Parkinson’s Disease (PD)
Affecting an estimated one million Americans and four to six million worldwide, Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s and is the 14th leading cause of death in the United States. There is no cure for PD and 60,000 new cases are diagnosed each year in the United States alone.