Parkinson Foundation Helpline Reaches 50,000-Call Milestone

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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Parkinson's mobile research study

The National Parkinson Foundation (NPF) announced that a proud milestone has been reached: it recently aided the 50,000th caller through its toll-free NPF Helpline.

“NPF’s Helpline links our groundbreaking research to improve the lives of people with Parkinson’s today directly with the community we serve,” John Kozyak, the NPF’s Chairman of the Board, said in a press release. “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.”

A lifesaving initiative, the NPF Helpline was launched in 2010 and relies on a team of nurses, social workers and therapists to answer calls, in English or Spanish, about Parkinson’s disease (PD). “We’re more than just an information line. We truly care about the people we serve, and that’s the key to our success,” explained Adolfo Diaz, NPF’s Director of Patient Services and Helpline manager. “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.”

The NPF Helpline staff provide callers with needed information, referrals to health professionals or community groups,  and emotional support. Staff helps callers locate resources in their area, and can send a customized informational packet post-call. Included in the NPF packet is detailed information on preparing for appointments with a local general practitioner or movement disorder specialist. Other NPF publications and the Aware in Care set can also be ordered through the Helpline.

Also available is the NPF’s online video series, “Ask the Helpline,”  in which NPF specialists answer callers’ most frequently asked questions, such as why exercise is so important for PD patients,  the role of a movement disorder specialist, and the likely evolution of the caregiver’s role. Questions or requests for information can also be sent to the Helpline by e-mail. “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 CMO.

The National Parkinson Foundation’s mission is to support PD patients and their families so that they can live their lives to the fullest. Since its founding in 1957, NPF has funded over $189 million in research, and in care and support programs.

The NPF Helpline can be reached at 1-800-4PD-INFO FREE (473-4636).