Dad’s death has daughters searching for cure
By Jane Donahue For Sun-Times Media October 9, 2012 9:08AM
Kathy Petrak with her dad, Bill Pacella, on her wedding day, January 15, 2005.
If you go
Who: The community is invited to the annual dinner to raise funds and awareness for pulmonary fibrosis.
What: 2012 Breathe Benefit: Inspiring a Cure for Pulmonary Fibrosis
When: 6:30 p.m. Oct. 13
Where: The Drake, 140 E. Walton
Cost: Tickets are $250 and can be purchased online at www.pulmonaryfibrosis.org
Global dinner: Those who can’t attend but wish to be involved can host their own event. The global dinner was created “to allow individuals from Paris, Ill., to Paris, France” to participate in Breathe Benefit 2012. For more information about the global dinner, contact Jennifer Bulandr at firstname.lastname@example.org
Updated: November 11, 2012 6:05AM
Like many people, Naperville resident Kathy Petrak had never heard of pulmonary fibrosis. That changed in 2006 when her dad, Bill Pacella, was diagnosed with the deadly lung disease.
“He began exhibiting symptoms back in 1997, but was told he was ‘out of shape’ and ‘needed to lose weight,’” said the 32-year-old Petrak. “So many people aren’t informed and educated about pulmonary fibrosis. Often patients are misdiagnosed. It’s a horribly frustrating, debilitating and devastating disease.”
Pulmonary fibrosis is a condition in which the lung tissue becomes thickened and scarred. Over a period of time, the lungs are unable to transfer oxygen into the bloodstream, depriving the brain and other organs the oxygen they need.
It’s a devastating disease that robs people of their ability to breathe.
In 2009, Petrak’s dad lost his battle with pulmonary fibrosis. Since then, she continues to fight for him and others affected by the disease.
“I watched my father struggle with the disease, and I knew I had to get involved,” Petrak said. “Since then I have become devoted to helping the Pulmonary Fibrosis Foundation spread awareness and raise funds for a treatment and a cure. It might be too late for my efforts to help (my dad) directly, but if I can bring awareness and support to others, then I can keep his memory and spirit alive.”
On Oct. 13, Petrak is co-chairing Breathe Benefit 2012, the Pulmonary Fibrosis Foundation’s annual gala at the Drake Hotel. The fundraising event allows the foundation to continue to fund research toward treatment and a cure, and provide essential support for patients and their families.
“Attendees can expect an evening that inspires hope for a cure, and wonderful fellowship among the pulmonary fibrosis community and the national medical community,” Petrak said. “The foundation is there to help patients and families until a treatment or cure is found, and I take pride in helping them achieve their mission.”
Jennifer Bulandr shares the sentiment.
Her father, John Lukasik, was diagnosed with pulmonary fibrosis in 2002 and died nine weeks later.
Bulandr said she turned to the Internet to learn about the disease and found the Pulmonary Fibrosis Foundation, ironically which has headquarters in Chicago. The foundation was a great source of information and support for her family, and she joined the foundation as a way to give back.
“I started volunteering and that shifted into the position I have now,” said Bulandr, the foundation’s director of community relations. “I speak on a regular basis with patients and caregivers and families, those who have lost their loved ones, and I understand intimately.”
Bulandr said it’s a very “individual disease” that does not have an FDA approved treatment or a cure, which is why Breathe Benefit 2012 is so vital.
“It’s a wonderful way for our researchers, doctors and patient community to come together,” Bulandr said. “It’s a very exciting night because these are the people that are doing all of our frontline research.
“This disease is isolating in a way, so it’s a great opportunity to have one night where we are all together.”
This year, the foundation added a “global dinner,” which has been met with great enthusiasm.
“We realized it would be somewhat limited with seating anywhere we went, and a lot of our patients would not be able to attend either for health or financial reasons,” Bulandr said. “We created an inclusive component to this — a global dinner — where people will be doing what we are doing in Chicago but on their own.”
Each global dinner host receives an eTool kit that offers support in creating an event of their choice.
“They will be doing what we are doing in Chicago — raising money and awareness — but in a way that is as unique as the person they are hosting it in honor of,” said Bulandr. “It’s so personal, and people are rallying around this concept. ”
Petrak said her family knew very little about pulmonary fibrosis even though there are more than 200,000 patients living with it in the United States. It’s a cause she will continue to fight for in memory of her dad.
“Approximately 40,000 of those patients pass away from pulmonary fibrosis each year — about the same as breast cancer,” Petrak said. “I never want any other family to feel so isolated and confused after diagnosis.”