30Nov

Building Community to Leave Parkinson’s Behind

I am a gala-loving girl. For a long time one of my bucket list items was to organize a spectacular event. However, when the shocking diagnosis of young-onset Parkinson's disease (PD) was given to me in 2006, fear of the unknown set in, and a bucket list became inconceivable.

The discovery of The Michael J. Fox Foundation and Team Fox a few years later helped to rekindle this forgotten dream. Anyone who has been to a Team Fox event — whether it be a golf outing, pancake breakfast, marathon or anything else — knows exactly what I am talking about. The sense of hope, inspiration and family is undeniable. And while living in fear of Parkinson's was exhausting, the Team Fox environment was energizing.

I decided it was time to get involved. Hello, bucket list.

In 2011, I organized the first Leave Parkinson's Behind Gala; this past October, I hosted my fourth! Complete with a cocktail hour, dinner, dancing to the music of a fantastic band, auction and raffles, this year's event was the biggest yet, raising more than $35,000.

As my symptoms have progressed and event planning becomes more difficult, my need to focus on PD awareness has grown strong. In the past, I always subconsciously avoided "going there" while instead riding the wave of the evening, more focused on attempting to maneuver around the dance floor in pumps.

So this year, I had a spur-of-the-moment idea. I posted on a Facebook community group page: "Is anyone experienced in making documentaries?" I briefly explained my purpose, adding, "By the way, I have no money to pay for it."

Amazingly, I received nine responses. I also received one from a gentleman skilled in the field offering to make an attempt for such a worthwhile cause.

But it was the very first reply I received that "felt" right.

At the risk of embarrassing her daughter, a loving mom replied that she was certain her daughter Brielle would want to tackle this assignment. Filmmaking was a passion for the high school freshman. A week later, when the three of us met at a local coffee shop, the connection was immediate and Brielle's enthusiasm to tackle this time-consuming endeavor was clear.

I did not oversee this project because I wanted Brielle to call it her own. Between the endless demands of a distinguished honor roll student, she poured her heart and soul into it. She interviewed several PD community members about their stories and combined then with key facts about PD. When it debuted at the gala, a standing ovation was received and I hugged Brielle with all the strength I had.

There is one more aspect to this story, which is the best part of all. Brielle caught the Team Fox spirit as well. As a member of her high school Key Club, she organized a "Pretzels and Pops for Parkinson's" fundraiser. The week prior to the event, a hard-working group of students decorated and packaged more than 400 chocolate covered pretzels and pops and sold them in school. Brielle, beaming, presented me with a $642.20 check for The Michael J. Fox Foundation at the gala.

To Brielle, you are proof that our journeys through life are brightened by the acts of kindness and caring of the friends we make along the way… and that the Team Fox spirit will only grow stronger until a cure is found. Thank you to all who participated in the video, especially dear friends with Parkinson's who shared their story as well. I'm so proud to be part of the growing Team Fox family determined to "Leave Parkinson's Behind".

Editor's Note: Since it's debut, Brielle's short documentary (below) has garnered nearly 900 views on YouTube and played an instrumental role at the event in sharing the stories of local community members living with Parkinson's today.

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