As difficult as it is for an individual with Parkinson’s disease to move forward, the effort to raise money for research and treatment is also something that occurs one step at a time. One Canyon Country woman is making the process of raising funds and awareness look more like a trot than a walk as community development manager for the National Parkinson Foundation for the last two years.
“I came to the foundation because my younger brother has early-onset Parkinson’s disease (PD), diagnosed four years ago, when he was only 32,” explained Sarah Osborne. “It was a very confusing time for our whole family, with emotions ranging from denial and disbelief to fear and sadness. None of us knew what to expect or how to handle the inevitable changes we were about to face. The National Parkinson Foundation has been a valuable and trusted source of information for us and thousands of families.”
According to the NPF website, Parkinson’s disease affects an estimated one million Americans and four to six million worldwide. PD 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.
Actor Michael J. Fox has brought attention to the need for funding for the incurable disease, which causes symptoms such as tremors, stiffness and slow movement. The mission of the Michael J. Fox Foundation for Parkinson’s Research is to “(accelerate) breakthroughs patients can feel in their everyday lives.”
“The best advice I can give someone is to stay away from searching the general internet and guard yourself from the avalanche of misinformation, speculation, and trends,” Osborne said. “Talk to and listen to your medical professionals, connect with reputable organizations, advocate for yourself or loved one, and STAY ACTIVE! These are key to fighting PD.”
The limited movement that victims of Parkinson’s disease experience is the point of the organization’s fundraiser, the “Moving Day” walk. Locally, Santa Clarita is host to Moving Day North LA County later this month, which is a celebration of movement, while raising funds and making victims of the disease aware of the benefits of exercise in managing Parkinson’s disease.
The National Parkinson Foundation Moving Day walk will be held at Valencia Heritage Park on April 29, 2017 from 9:30 a.m.-12:30 p.m. Participants can choose the family-friendly walk course or enjoy the kids’ area, a “Caregivers Relaxation Tent” or visit the “Movement Pavilion,” a tent with activities such as yoga, Pilates, tai chi, dance and more.
Last year the local effort raised nearly $60,000, which is used to provide free patient and caregiver resources like life-saving “Aware in Care” hospital kits, the professionally-staffed NPF Helpline, education, and part of the funds stay local in the form of community grants.
“Moving Day is fun, it is great exercise and it’s educational,” Osborne said. “But mostly, the support of the community enables us to continue to make meaningful changes in the lives of those with Parkinson’s. We believe that ‘People who move change the world.’”
Last year’s top fundraising team came from Canyon Country: “Carolyn’s Cruisers.” It was Carolyn’s sister, Mary, who signed up their team of nine siblings, who then rallied their families around the cause. “I was diagnosed with Parkinson’s disease two years ago,” said Carolyn. “I had a hard time accepting this, because I had already been through so much. In 2004, I was diagnosed with mantel cell lymphoma. I fought back with a stem cell transplant, but the lymphoma returned. In 2007, I underwent a bone marrow transplant, and I recently celebrated 10 years of being cancer free!”
After Carolyn was diagnosed with PD she was still working as a full-time registered nurse, trying to persevere through the symptoms —difficulty walking, clumsiness, falling and tremors.
“Fast forward five months later when my family heard about Moving Day North Los Angeles,” Carolyn continued. “It was exactly what I needed. The Moving Day walk motivated me to turn something negative into a positive. When I began training in March, I was barely able to walk a quarter of a mile. But I did not give up and I continued to walk three days per week. My doctors helped me by adjusting my medication and providing me with ways to improve my stride. It was my dream to be able to accomplish this walk and not give up on the possibilities of what I can achieve. I realized that I couldn’t let this disease be the reason for not doing something. At Moving Day North LA I walked with my team and completed my first 5K! Goal accomplished!”
Nationwide, Moving Day has funded millions of dollars in mission services, focusing on addressing the unmet needs in the Parkinson’s community, expanding successful programs to new areas and developing new programs to make life better for those living with the disease.
“We have funded the largest clinical study of PD ever, called the Parkinson’s Outcomes Project (POP),” Osborne said. “Started in 2009, the POP involves nearly 10,000 participants in four countries, with the goal of improving patient care and outcomes.”
According to Osborne, key findings include the following:
Interventions that provide neuroprotective benefits, such as exercise, could change the course of the disease.
Increasing physical activity to at least 2.5 hours a week slows the decline in quality of life.
Regular neurologist care could save the lives of thousands of people each year.
Depression and anxiety are the number one factors impacting the overall health status of patients.
Osborne moved to Santa Clarita a decade ago and now lives in Canyon Country. “We like the family atmosphere of our neighborhood and being on the ‘quiet side of town,’” she said. “We have great access to the 14 and bought a home at a great value, comparing size, amenities, and price, so we’re very happy to call Canyon Country home.”
Henry Mayo Newhall Hospital and St. Jude Medical are sponsors of Moving Day North LA. To learn more about how you, your family and friends and/or your company can get involved, visit www.MovingDayNorthLA.org.
For more information about the disease, visit www.parkinson.org, or call the NPF Helpline at 1-800-4PD-INFO (473-4636).