Awareness is a powerful tool.

This week I had the opportunity to speak to the residents in our community. I have hosted three golf tournaments to raise money and facilitate a Parkinson’s support group. The activities coordinator asked me to talk about our support group and make a “plug” for our next tournament.

Since I have been really open about having PD, even though my symptoms are under control after seven years, everyone who lives here has been exposed to our family’s journey. They are aware. This awareness has been the driving force in our ability to reach people and help the PD community.

So I went to the meeting and spoke about our support group, the tournament, and a surprise topic.

I explained to the meeting that the support group has grown eight fold since it was started three years ago. I don’t know where the members come from. They hear about us from doctors, members of the group, and lastly from people who have been exposed to us telling our story: Awareness.

I shared with them that we’ve got a mantra that we share to all those with PD, who will listen, “YOU ARE NOT ALONE”. As part of walking the walk, our support group has access to us 24/7. Their awareness that they are never alone is very powerful. After our presentation Monday about our support group, that awareness of what we do has increased within the community.

So, when I began talking about the tournament, most people were aware that we had been successful, but not to the extent caused by the generosity of the Brin-Wojciki Challenge that matched funds raised for the Michael J Fox Foundation in 2012. Even without the matching funds, we were able to raise more money in 2012 than we did in the previous two years. How were we able to do this?

Everyone knew that we had fun and the money they donated went directly to finding a cure. They knew what that meant for me and their friends with PD.  They were aware that they were doing something important. That is powerful stuff. After the meeting people came to me to offer their assistance in our next tournament. I have come to the conclusion that people want to help, they just need to know where they are needed.

Then it was time for the surprise. I explained to them that I am a Fox Trial Finder ambassador. I shared the fact that I have been enrolled in a trial for over five years, my wife, Cecily, is a control in the Fox PPMI trial, and both of my daughters have enrolled in the Fox Trial Finder. I presented how easy it is to enroll in the program. Then, I asked them if they knew how they could contribute if they didn’t have PD. Of course they didn’t. I told them of the need for non-blood related volunteers for controls in various trials, including the Fox PPMI trial. About 25% of the audience took brochures. I don’t know how many will sign up, but I do know that there is a better chance now that they are aware of the program.

So, in 20 minutes, I was able to raise the awareness of 100 people of things that are important to me and my family. What effect will that have? I don’t know, but it will build relationships at some level. We build relationships, we make others aware of our journey, and suddenly the journey isn’t ours alone. Isn’t that what it is all about?

TWO SHOES ON AGAIN

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About bobharmon49

Parkinson’s Cure Research Funding, Inc. (“PCRF”) was founded in November, 2010 as a non-profit corporation dedicated to raising money for Parkinson’s disease research and patient support. The corporation’s main fundraising event is an annual golf tournament held in April at the Lake Ashton community in Winter Haven and Lake Wales, Florida. Proceeds from the event have been donated to the Michael J Fox Foundation. Prior to forming PCRF the first golf tournament was held in April 2009 and we raised $12,000. The second tournament in April 2010 raised $27,000. Our next tournament will be held on April 7, 2012. At each of the first two golf outings, 215 players filled the two 18 hole golf courses at Lake Ashton. PCRF was founded by Bob and Cecily Harmon. Bob was diagnosed with Parkinson’s in 2006 and is still very active playing golf and working to help find a cure for PD through fund-raising. He has recently been named to the Southwest Florida Regional Council of the Michael J Fox Foundation. Their mission is to drive ideas about local engagement opportunities to increase Parkinson’s Disease awareness, enhance education efforts and connect with untapped resources to develop the overall expansion of the Fox Foundation in Florida. The Harmon’s facilitate the Lake Ashton Parkinson’s Outreach Group which supports local Parkinson’s patients and their care partners. The group meets on the first Friday of every month at 10am at Lake Ashton and is open to the Parkinson’s community in the general public.

2 thoughts on “Building Parkinson’s awareness and showing people how they can help

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