Deer Park family has personal quest to end pulmonary fibrosis
My dad was diagnosed with pulmonary fibrosis on March 17, 2009. It was my daughter's 4th birthday and most of my family was gathered to celebrate. We had never heard of pulmonary fibrosis until my dad shared his diagnosis with us.
He told us two things that night: Don't look the disease up online, there's a lot of scary information on the web; and two, his doctor reassured him he could live many years with pulmonary fibrosis.
About the Pulmonary Fibrosis Foundation
Mission: To help find a cure for idiopathic pulmonary fibrosis; be an advocate for the pulmonary fibrosis community; promote disease awareness; provide a compassionate environment for patients and their families.
What we do: The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. In December 2011, the PFF hosted its first biennial international scientific conference. The Summit 2013 will be held Dec. 5-7, 2013, in Chicago.
Location: 230 E. Ohio St., Suite 304, Chicago, 60611
Details: www.pulmonaryfibrosis.org or (888) 733-6741
Our family was blindsided when six short months later my dad succumbed to this horrific disease. We were shocked that our seemingly healthy 59-year-old father could be taken from us so quickly, and by a disease we had no prior knowledge of.
As we spoke to doctors and asked questions, we became concerned as we learned that pulmonary fibrosis is an idiopathic disease. Doctors don't know what causes the disease and do not have a cure for it.
Fearful for our future, not knowing if the disease was hereditary, and mourning our father, we decided on the day of his funeral to start the Michael P. Savoca Memorial Foundation in honor of my dad.
Our mission is simple: to increase public awareness and raise funds to help support organizations that are dedicated to finding a cure and raising awareness of pulmonary fibrosis.
Our foundation had two successful fundraising events in 2010. When our board met to determine where to distribute the funds we had raised, we chose to donate some of the money to the Pulmonary Fibrosis Foundation because we felt their actions matched our mission statement, specifically increasing public awareness of pulmonary fibrosis.
After our initial contribution was made, our foundation had the pleasure of meeting Patti Tuomey, COO, and Jennifer Bulandr, director of community affairs, from the Pulmonary Fibrosis Foundation. Over the last two years, Patti and Jennifer have shared with us the wonderful accomplishments the Pulmonary Fibrosis Foundation has made.
Patti and Jennifer attended the Michael P. Savoca Foundation's third annual Celebrating a Breath of Hope event this past July.
Patti was kind enough to speak to our friends and family at this event. She shared her enthusiasm for the Care Centers the Pulmonary Fibrosis Foundation was helping to establish.
When the Pulmonary Fibrosis Foundation invited my family to its Breathe Benefit this year, we were very excited to attend. The initial appeal of the night was to help raise money on behalf of pulmonary fibrosis and give support to Patti, Jennifer and the entire PFF crew who have so generously encouraged the Michael P. Savoca Memorial Foundation.
The evening surpassed my expectations. Mary Ann Ahern, NBC 5 correspondent and the evening's emcee; Dr. Daniel Rose, the CEO of the Pulmonary Fibrosis Foundation; and Broadway actress Julie Halston were among the speakers. They resonated the feelings and experiences my family has encountered over the past three years.
Some of those feelings and experiences were simple, such as hearing people ask, "Pulmonary fibrosis? Is that like cystic fibrosis?" or "Was your dad a smoker?" Hearing those questions asked each time we talk about my dad magnifies the need for increased public awareness of pulmonary fibrosis.
When Breathe Benefit co-chair Kathy Petrak spoke of losing her father and how her child won't know her dad, my family immediately thought of my nephew Connor, who was born three weeks before my dad passed; my 7-month-old niece Kelsey; and my brother, Tony, and his wife, Kelly, who are expecting their first child in January. These children will also grow up not knowing their grandfather.
As we related to Kathy and her family's loss, my family was again motivated to help raise funds for the research toward pulmonary fibrosis.
Although my family attended the Breathe Benefit to support the efforts of the Pulmonary Fibrosis Foundation, we felt as though the event provided compassionate support to our family and our foundation.
Belonging to this community of family and friends affected by pulmonary fibrosis, as well as the doctors devoting their profession to this disease, it is especially motivating and inspiring as the Michael P. Savoca Memorial Foundation begins to plan our fundraising events for 2013.
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