Local Youth Team up with the Paul Ruby Foundation to fight Parkinson’s

The youth involved in the Paul Ruby Foundation don’t have the conventional idea of the “typical Parkinson’s patient”. Almost 500,000 people in the U.S have this neurodegenerative disease, characterized by tremors, difficulty with body movement and function. Parkinson’s disease is commonly known as a disease that affects older adults, with the average age of onset at 62. However, many teens and youth throughout Geneva and its surrounding communities know it can affect younger people and are doing something to try to end Parkinson’s disease.

They’ve met Paul Ruby. Ruby, General Manager of the Herrington Inn and Spa, was diagnosed with Parkinson’s in 2006 while in his early forties. Since his diagnosis, Paul has not rested in efforts to find a cure. As the efforts of the Paul Ruby Foundation have grown, the level of youth involvement has also grown.  Involvement of young people keeps the foundation on the forefront of developing new ways to raise awareness for Parkinson’s disease and continually brings new talent to the cause.

“Having young people involved is unique in a foundation like ours. In Geneva, so often the community comes together to support a cause and sometimes the kids of parents involved help out, but it’s really rare and special to have teens come out because they’ve heard of the foundation independently and want to help find a cure for Parkinson’s”, says Ruby.

This year, there are several youth on the Advisory Board, ranging from ages 21 to 14, a local teen band in Concert for a Cure, Boy Scout Troop 37, as well as the seniors at Geneva High School, who donated to the foundation through their annual bike ride.

First enter Meagan Holbrook.  Meagan is a GHS grad and was involved in many leadership activities while in high school and this civic mindedness continued in college.  Meagan is a senior at University of Mary Washington, and even though involved in many impressive activities at school, she remains on call as the foundation’s PR Associate and serves on the Advisory Board 

This summer, when I had an unexpected illness, Meagan was our first choice to take on the role of concert co-chair, along with Paul and me. She took capable charge so swiftly; I believe I was kept off the email longer than necessary because she handled the ever-changing aspects of a big event with grace.

Kayleigh Barnaba, 14, has been raising money for the foundation for five years. Over the years, she has hosted parties at the Herrington, in which she asks for donations to the foundation rather than gifts. She has raised thousands of dollars to support research and is an advisory board member. This year when she learned Bill Geist was diagnosed with Parkinson’s she sent him an email and then dropped off a plant to his office in New York on a visit with her family, telling him about the Paul Ruby Foundation.

Kevin Brouilette, a recent GHS grad, also an advisory board member, was the recipient of this year’s Paul Ruby Foundation scholarship. Brouilette provided assistance to the foundation with graphic design and website assistance, and he has been involved since 2009. In addition, the foundation has two interns, Caroline Belz, recent Rosary grad, and Kaeli Krause, senior at Geneva High School. Kaeli has done a lot of the graphic design this year and has taken on the task of chairing the Kids’ Activities Chair.

“It’s been like a snowball effect. Students have gotten involved either because they know Mrs. Vogelsberg, or Paul or maybe their parents are involved. Their friends learn about it from us and then more people get involved in their own way”, says Krause.

Geneva Boy Scout Troop 37 donated over $5,000 raised on their 750-mile bike ride to Niagara Falls. Not only did they raise money through biking, but the senior class at Geneva High School raised over $500 through their annual senior bike ride.

This year’s Swedish Days Battle of the Bands winner, Fargo, is performing at Concert for a Cure. This group, consisting of Ryan Thomas, Robert Donile, Brandon Cantwell, and David DelGiudice, all under the age of 21, has already performed at venues such as House of Blues in Chicago.

In not for profit organizations, one of the most important principles in the coming years is developing strong relationships with youth and young volunteers because of the change between the baby boomer generation and the upcoming generations. Not only does the youth involvement develop and foster the idea of participating in community service, but it also ensures organizations are self-sustaining. By getting teenagers to understand the importance of an organization’s mission, they develop loyalty to the cause. As a foundation, we recognize the abilities of young people and the contributions of which they are capable. The adults have developed strong bonds with the younger members of the foundation and there is mutual understanding of what can be brought to the table together.

The foundation’s goal is to one day dismantle because a cure for Parkinson’s has been found, but it will leave a lasting effect on the youth and teens involved.

Tickets are still available for Concert for a Cure at Tanna Farms on August 25. Visit www.paulrubyfoundation.org, or visit one of the many ticket purchase locations, including the Geneva History Center, Galena Garlic, Geneva Ace Hardware, and the Mill Creek Market.