How you can get involved in Parkinson’s Awareness Month

Believe it or not, I never knew until recently that Parkinson’s disease had an awareness month. But I assure you that in the nearly 12 years since my diagnosis, I am aware of Parkinson’s in April — and every other month!

Parkinson’s Awareness Month starts tomorrow, while World Parkinson’s Day falls on April 11. These dates aren’t just for Parkinson’s patients; we can all do several things to raise awareness about the disease and speed up the search for a cure. Here are a few.

Join a clinical trial or other study

You can search online for clinical trials for which you might qualify. All sorts of trials are going on, with some aimed at reversing and curing Parkinson’s. Others seek to ease Parkinson’s symptoms or halt the disease’s progression.

In recent years, increased research funding, driven in part by awareness efforts, has facilitated more drugs and other therapies being added to the approval pipeline or the market. By participating, your effort could help to yield answers for the entire community.

One research program from the Michael J. Fox Foundation for Parkinson’s Research is the Parkinson’s Progression Markers Initiative (PPMI). This long-term international study collects data from Parkinson’s patients, caregivers, relatives, and others who don’t have the disease. The goal is to create a database of how the disease presents and progresses so that researchers can mine it for insights.

For example, the data were recently used to determine that most people with Parkinson’s don’t experience dementia in the first decade after diagnosis, which challenges long-held beliefs that dementia is a fairly common issue early on. My dad and I are both participants in PPMI, which takes us only a few minutes to do every three months.

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Start or volunteer for a fundraiser

There are tons of walks, bike rides, and other activities designed to promote awareness about Parkinson’s and raise funding for research and support efforts. One great resource for finding a fundraiser or creating your own is Team Fox. It offers ideas, support, and online fundraising pages for any type of event you can dream up. Every penny raised by Team Fox events goes to Parkinson’s research.

One thing to think about when choosing an activity is showing off what’s special about you. You can do practically anything to raise funds and awareness. About 10 years ago, at an old job, we held an April Pancakes for Parkinson’s breakfast in my office. We busted out the griddles and spatulas and offered all-you-can-eat pancakes for a $10 donation. Most people donated more, and I even persuaded the company president and other leaders to don aprons and chef hats to raise even more money.

Don’t be afraid to get creative with your awareness efforts!

Donate

Whether it’s a dollar or a million, donations help research, which needs funding. With so many government sources of funding facing uncertainty right now, private support for medical research is vitally important. Parkinson’s disease research has long sought to determine which investigational therapies may be viable for investment and development by pharmaceutical companies and other healthcare organizations. We can’t let the clock, or the money, run out now as we march closer to a cure.

There are so many ways to donate. You can do it directly at the Parkinson’s Foundation and Michael J. Fox Foundation websites. You can also search on both sites for a fundraiser you’d like to support. You can make plans to donate through your will or in tribute to someone else. Any way you do it, and no matter how much it is, it makes a difference.

It seems odd to say, “Let’s celebrate Parkinson’s Awareness Month.” Celebrating a disease isn’t much fun. But hopefully, by raising awareness now, we can one day celebrate the end of Parkinson’s disease forever.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.