To provide new patients with the information, tools and resources they need to best manage their health, the Parkinson’s Foundation has launched a campaign to close the gap between learning of an illness and knowing how and where to find help.
Called “Newly Diagnosed: Building a Better Life with Parkinson’s Disease,” the effort is said to be the first such national campaign designed to reach the 60,000 people in the U.S. estimated to be diagnosed with Parkinson’s (PD) every year.
“In an effort to help provide better outcomes from the beginning of their journey, the Parkinson’s Foundation is whole-heartedly committed to connecting sooner with those facing a life-changing diagnosis,” John L. Lehr, the foundation’s president and CEO, said in a news release. “Our goal is to empower everyone new to our community to build a better life with Parkinson’s from day one while addressing their unmet needs.”
The organization surveyed more than 1,100 PD patients in January to better understand the needs and priorities of the newly diagnosed. Results showed that 42 percent of patients and 45 percent of their care partners had received no educational materials about Parkinson’s within six months of diagnosis.
Those findings led to the campaign, which seeks to not only connect with new patients early, but to provide ongoing support. The effort will include a free Newly Diagnosed Kit that may be ordered or downloaded, educational programs focused on care and research, funding for community grants that help the newly diagnosed, relevant podcasts, and an online community to be launched later this year aimed at establishing peer-to-peer connections.
“Early in my diagnosis with Young Onset Parkinson’s, I realized that I couldn’t find all of the answers I was looking for,” said Christina Korines, who was diagnosed at 33. “I needed a partner to help me navigate my diagnosis, and the Parkinson’s Foundation is the go-to partner for anyone diagnosed with Parkinson’s, especially the newly diagnosed.”
The organization now offers has a video and other information for new patients, including Five Steps to Living Well. More information is also available by calling the Parkinson’s Foundation Helpline at 800-4PD-INFO.
Parkinson’s disease affects nearly 1 million U.S. residents and nearly 10 million people globally. After Alzheimer’s, it’s the second most common neurodegenerative disorder in the U.S.