Special Events Stories & Photos

January 31, 2009
A Nickel Can Make A Difference

5 Pennies=Nickel — A Little Girl is a Big Inspiration to Friends and Family
By Patti Lalley, PHA Special Events Intern and Sarah Morris, PHA Web Intern

e "Nikki" ElsenbroekDo you think a nickel can make a difference in the fight for a PH cure? We know it can!

The second annual “A Cure for Five Pennies: Daddy’s Little Girl” fundraiser was held Jan. 31, 2009, in Schaumburg, Ill., to honor 7-year-old Nicole “Nikki” Elsenbroek. Nicole was not only the reason for the event, but also the back story for the event’s unusual name. The name evolved because Nicole’s father Scott Elsenbroek nicknamed his daughter “Five Pennies.” The father said, it was all because five pennies equals a nickel (Nicole).

Denise DeGuzman, who was co-chairwoman of this year’s event along with Daniela Tereza, first met the Elsenbroek family when DeGuzman’s son Adam and Nikki were in pre-school together. DeGuzman was among a group of moms who formed a friendship four years ago with Nicole’s mother, Maria Elsenbroek, as they all waited to pick up their children from preschool. The moms started working together to plan this event because they “want to help find a cure for Nikki and others afflicted with this disorder,” DeGuzman said.

Maria Elsenbroek said her friends’ involvement was a surprise. "I had no idea how to organize this type of event and then my wonderful, amazing group of friends decided to help me get something together for raising money to find a cure for this condition.” The moms in the group include Suzanne Avila, Julie Bosshart, Kim Dobrincu, Kate Johnson, Kristina Knapp, Maria Yonkus, Mary Austin, and Julie Olsen.

Last year’s fundraiser netted over $4,000. Because of the success from last year’s benefit, the moms agreed to continue their fundraising efforts again this year. The event was attended by almost 150 people, who had a night filled with live entertainment, music, raffles and dinner. Participants were also joined by Nikki’s doctor and nurse.

“When we started discussing the fundraiser last year, we contemplated whether children should be invited or not. Since the benefit was because of Nikki, we included the children and then realized that we’d definitely made the right decision,” DeGuzman said. Maria Elsenbroek said, Nikki’s favorite part is that the event is "kid orientated. All the kids can come out for this beautiful event, run around and have fun. This year, Victor Pacini put on a motivational show geared towards children, and the children enjoyed a night filled with dancing with their friends.”

The annual event has also taught the Elsenbroek family that with as many children and adults afflicted with PH, raising awareness of the disease is essential. "We need to further educate doctors and nurses to know what to look for before it gets worse,” Maria Elsenbroek said. “We also want to help other families that have been affected to give them a better outlook of what is to come. I am on a mission to help my Nikki and others too. I will do what I can to help in any way possible.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.