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posted: 9/15/2012 10:07 AM

Bloomingdale teen starts foundation to help others with cystic fibrosis

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  • The Belmonte family -- seated, Adrian, twins Alexis and Will, and Bill -- started the Will B Foundation with family and friends to support cystic fibrosis research.

      The Belmonte family -- seated, Adrian, twins Alexis and Will, and Bill -- started the Will B Foundation with family and friends to support cystic fibrosis research.
    Courtesy of the Belmonte family

  • Will Belmonte, turning 13 on Monday, Sept. 17, undergoes hourlong treatments twice a day to ease his cystic fibrosis.

      Will Belmonte, turning 13 on Monday, Sept. 17, undergoes hourlong treatments twice a day to ease his cystic fibrosis.
    Courtesy of the Belmonte family

 
 

It'd be easy for Will Belmonte of Bloomingdale to spout excuses and decide there's so much he just can't do. After all, he has cystic fibrosis. Just breathing can be difficult for him, and maintaining his weight is a challenge.

But that's not how Will sees things.

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Will sees his hourlong treatments that clear mucus from his lungs and digestive system each morning and night as a pathway to being a top student and playing basketball, volleyball, baseball and golf.

He sees his cystic fibrosis not as a disease that will keep him from life, but as a chance to help others live a better life.

As he celebrates his 13th birthday with his twin sister, Alexis, he and his family are running a foundation that aims to raise money for organizations that research treatments and seek to cure CF. The Will B Foundation -- which was Will's idea -- is supporting the CF Center at Lurie Children's Hospital in Chicago and the Cystic Fibrosis Foundation.

Even in its early stages, the Will B Foundation has garnered support from the Belmontes' family, friends and acquaintances. A fundraiser at the children's school, St. Walter's School in Roselle, contributes to the cause; schoolmates asked friends to donate to the foundation rather than buy them birthday presents.

"It's not always easy to get everyone to support your own cause when so many deserve the help too," said Will's mother, Adrian Belmonte, who serves as president of the foundation. "But when you see how bravely Will fights his disease and see his infectious happiness, you know people want to help."

Today Adrian Belmonte tells us more about the foundation.

Q. What is the foundation's mission?

A. The Will B Foundation raises money for research and the development of therapies to help improve the lives of those with cystic fibrosis, with the ultimate goal of a finding a cure.

Cystic fibrosis is a genetic disease that affects the lungs and digestive system. Will's cells produces thick sticky mucus that can make him susceptible to lung infections and complicate the way he digests his food.

Currently, there is no cure for CF and because CF is a rare disease, affecting only 30,000 children and adults in the United States, there is little federal funding given to cystic fibrosis.

Will Belmonte believes there "Will B" a cure. Will asked his father and I to help him start the Will B Foundation so that one day soon there "Will B" a cure for cystic fibrosis.

Q. How do you work toward accomplishing that goal?

A. We are reaching out to family, friends and the community to support a fundraiser that includes various raffles to help raise money for the CF Foundation and Lurie Children's Hospital, where Will receives his care.

Q. When and why did the foundation start? How has it grown?

A. The Will B Foundation was started in December 2010 and amended in May 2011 as a recognized 501(c)(3) organization.

The Will B Foundation was inspired by Will Belmonte. Will was diagnosed with CF at the age of 10. After his diagnosis, Will asked us if he could start a foundation to find a cure for CF. First, the Will B Foundation was just a name on paper. Then it became a group of family and friends wanting to help Will. Then it became a recognized nonprofit organization.

And here we are. Our first fundraiser was on Sept. 11. The Will B Foundation has grown in a very, very short period of time thanks to one little boy's desire to find a cure for CF and a big group of people supporting his cause.

Q. What kind of successes have you had?

A. Our family has always supported other groups, schools or organizations that need to raise money for improvements, problems or needs. We enjoy helping others. We know from our own experience, people get requests all the time to donate their time, talents and treasures to many wonderful organizations. It becomes harder when the table is turned and you are now asking people to give to your specific cause. What we have found successful is networking the old fashioned way -- pick up the phone and talk to people -- and combine it with the modern communication of social media, such as Facebook, where family and friends are spreading the word about the Will B Foundation. The synergy is already helping us reach our goals.

Q. What challenges does the foundation currently face?

A. Time commitment is a big challenge. When Will first asked us to start the Will B Foundation, Bill and I were uncertain if we could make his request a reality. Not only are we both working parents, but taking care of Will's health is a priority and a commitment. We honestly didn't know if we could take on this endeavor. It's one thing to help others raise money, but now we are in charge. Bill and I are always willing to sacrifice our own personal time, but we are not willing to compromise Will's care. We really do try to use our time and efforts wisely, but there's always room for improvement.

Time commitment is probably challenging for our board members, too. There is no question of every board member's desire to help Will and the Will B Foundation, but our board members have other responsibilities like careers and their own families. We continue to work through the time constraints knowing how lucky we are to have these talented and dedicated board members wanting the same results.

Q. What do you wish the community at large knew about the organization?

A. It's amazing the emotional connection the board members have to Will and wanting to help his cause and his future.

Intriguing, is the long connection the board members have to each other. Tim Callahan, an accountant, and Joe Storto, a lawyer, have known the Belmonte family for 40 years. Joe lost his son in a motorcycle accident in 1991. He raised money for scholarships in his son's name for many years and brings his experience and wisdom to the Will B Foundation. Scott Marquardt, Will's dad's law partner, has managed political campaigns and fundraising events for more than 15 years.

Rounding out the board are Will's grandpa Bill Belmonte Sr.; Will's aunt Teresa Belmonte, a nurse at Central DuPage Hospital; Will's uncle Joe Belmonte, an anesthesiologist at Alexian Brothers; and Will's dad, Bill, and I.

Bill battles multiple sclerosis. Despite the challenges of his own disease, there is nothing more Bill would like to see happen than finding a cure for his son's disease. Bill has been the pipeline and the catapult for getting the Will B Foundation started.

Q. How can readers get involved?

A. Readers can get involved with the Will B Foundation by donating to the Will B Foundation.

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