Point Boro Boy's Family Held Fundraiser for CF Foundation

A Point Borough family whose son suffers with Cystic Fibrosis hosted a "Beach Bash" fundraiser for the Cystic Fibrosis Foundation at in Point Beach on Saturday.

The family of 7, held the fundraiser to help bolster the foundation's efforts to find a cure for the disease.

The admission price was $30 for the Cystic Fibrosis Foundation.

Aidan is in second grade at Ocean Road Elementary School.

The "Bash" was a primer for the family's participation in the Great Strides fundraising effort, a walk to raise money for the Cystic Fibrosis Foundation in Point Beach on May 20.

The event at Farrell's helped the family raise money for the Team Aidan All Stars, said Daniel Neville, Aidan's father.

For more information on Great Strides, see Aidan's page in the Great Strides web site.

Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the U.S. (70,000 worldwide), according to the Cystic Fibrosis website.

Ever since he was diagnosed with the disease at 8 days old, Aidan has had to endure a relentless battery of examinations, tests, surgeries and medications to fight to stay alive.

"He has gone through 11 sinus surgeries due to CF complications and is rarely not on antibiotics to fight infections," Nevllle said.

"We are doing everything we can as a family to help raise money because a cure is coming," Neville said. "We just need the funds to help scientists develop it. 

"CF is what's called an orphan disease which is a disease that has not been 'adopted' by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it," Neville explained. "So the money we raise is necessary for the research."

According to the CF Foundation website, those with CF have "a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school.

Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond."

Next month, the Nevilles are also having a fundraiser at Dairy Queen on Bridge Avenue in Point Borough and a garage sale at 1674 West End Drive, Point Borough. All proceeds will go to Aidan's All Stars.

Aidan's cousins are donating their toys and other items to the garage sale to help raise more money, Neville said.

More information on Aidan's condition can be found in his Journal section of the Caring Bridge website.

For more information, please see the green event flier posted with photos. The flier was created for free by Jen Moran, a Point Beach resident, who had not known the Neville family, but recently heard about their story and was moved to help.