Shamrockin’ for a Cure
Written by Carl Danbury, Jr.
Photo courtesy of Jonathan Phillips
Valentine’s Day passed with mixed emotions again this year for Jon and Pam Baker of Roswell. Feb. 14, 2003 was the day they found out that their oldest son, Gavin, had cystic fibrosis (CF), an incurable genetic disease that attacks the respiratory and digestive systems of sufferers. Approximately 35,000 have CF in the United States and
for those that do, life expectancy is just 37 years old. While research has constantly made progress with the introduction of new medicines that can provide comfort, there is no absolute cure for this genetic disease, just combative measures.
The Baker Boys
In most cases, children with CF are diagnosed by the age of 2 and though the timing was on target for the Baker family, the wait had been long enough. “I knew something was wrong with Gavin (now 13). I had taken him from doctor to doctor to doctor and nobody [could] figure out what he was suffering from. He was in a lot of pain because most of his symptoms were GI (gastrointestinal) related and sinus. No one put the pieces together,” Pam Baker said. “His main symptom was mal-absorption. He had severe cramping, vomited a few times and passed out a couple of times because of the pain. He was going to the bathroom 8 to 11 times per day. When he was finally diagnosed with CF (at 18 months old), I was actually relieved, because we could start treating him and taking the pain away.”
At the time of the Gavin’s diagnosis, Baker was six months pregnant with the couple’s next child. Three weeks later after an amniocentesis, they were told their second son, Jake, also would have the disease. This time she was angry. CF is passed along when both parents have the defective gene (CFTR) only 25 percent of the time. The couple’s youngest two children, Sabrina and Duncan, do not have CF.
“I went through a period of time that I was really mad. One day, Jon and I were watching our neighbors’ kids hitting baseballs in their batting cage, and we thought that’s never going to be us now,” Baker said. In time, they discovered that wasn’t true at all. After seeking counsel and solutions from others in the CF community as well as the CF foundation itself, Baker discovered an active lifestyle is one of the keys that has worked very well for her sons. Gavin is a fantastic wake boarder and plays lacrosse, while Jake plays tennis and enjoys performing.
Some CF patients, like Gavin and Jake, take 30 to 40 pills per day. Without adequate medical coverage, parents can accumulate nearly $100,000 in medical expenses per year to treat the disease. When the shock and anger of the diagnosis wore off, the Bakers unleashed their competitive fires on fundraising.
This past year, the Baker Boys’ Battalion eclipsed the $1 million mark in total funds raised in 10 years of participating in the foundation’s Great Strides program. “The first year I began running in CF charity races, I called and asked the foundation who the No. 1 team was in fundraising, and told them, ‘O.K., we’re going to beat it,’” Baker said. And they did. Raising $30,000 in a letter campaign, they were the No. 1 team in the country and held that spot for nine years.
Two of the Baker’s friends, Chris and Mary Guiney of Milton, wanted to lend a hand in the fundraising efforts for Gavin and Jake, and after witnessing firsthand the medicines, treatments and the intricate breathing apparatuses necessary for the Baker boys’ daily lives, the seeds for a full-fledged local fundraiser took root.
“Chris and I found ourselves wishing that Gavin and Jake weren’t sick. Wishing they didn’t have CF. Wishing that there was a cure. Wishing the Baker’s kids were healthy like ours. After a couple of years of wishing, we thought there just has to be something more that we can do,” Mary Guiney said. “We know the research is working. Our whole motive was to raise a lot of money so that the foundation could find a cure before it’s too late. At one time, life expectancy of a CF sufferer was 16. Well, 16 wasn’t long enough. Now, it’s 37, but that isn’t good enough, either. Treatments are great, but they aren’t cures. Because CF is genetic, it’s a control, not a cure. It’s within their grasp but they need research money to speed up the process,” she added.
No strangers to hosting parties, the Guineys held a poker party the first year that raised more than $3,000. It added fuel to the fundraising fire and paved the way for bringing their friends and associates together at Verizon Wireless Amphitheatere. Six weeks later, Shamrockin’ for a Cure was born.
Main Stage in March
Since 2009, the function has raised nearly $280,000 for CF, including $170,000 last year. ShamRockin’ will again be held on the Verizon main stage this year on Saturday, March 9 beginning at 7 p.m.
“I think people are looking for meaning or an opportunity to help others. They can go out to dinner with friends,
or go to a club, but really, who is that helping?” Guiney asked. “If you can have fun and help those with this horrible disease at the same time, even better.”
“There is something magical about Shamrockin,’” Baker said. “People have taken a vested interest in its success, even though they may have never known anything about CF before taking part in this event. Mary characterized the event perfectly when she said ‘We’re taking the ‘d’ out of fundraising’ a few years back.”
“There are enough black-tie events and not all are super fun. Let’s face it, the best times we ever had in our life were in college,” Baker continued. “We want to provide that [college] feeling one night per year, and that’s all we can really handle at this point,” she laughed. “It has turned into something a lot of people were missing in the fundraising and entertainment world.”
While a fun evening is at its center, fundraising is the vital component. “We felt very strongly that if people really understood what we wanted to accomplish, and why we wanted to accomplish it, it would be successful,” Chris Guiney said. Tom Murphy of Murphy Custom Builders in Alpharetta was a catalyst for the fun and fundraising at the first event. He contributed to its success with many silent and live auction bids, and according to Mary Guiney, continues to make an impact.
“We were fueled by Tom, who made us feel successful that first year,” she said. “Since then, he has contributed more than $50,000 of his time and his services through his construction business.” It is contributions like those that enable the Guineys to be hopeful about the future for this event and others that may spawn from it.
“We’re not done. We’re not even close to done. What we have done is nothing until there is a cure,” Chris Guiney said. “There are two boys in our lives that we need to save and there are 35,000 others in the United States and several hundred thousand around the world who need us. To stop now or to say that we have accomplished anything is premature — I try not to say this to our committee because what we have accomplished is wonderful — but it’s just the beginning. We need to keep fighting harder and harder every year. Until there’s a press release issued that says there’s a solution to extend the lives of 100 percent of CF sufferers that will have a normal lifespan, we just have to keep going.”
“I would like to think that Shamrockin’ could extend to cities all over America. That would help us raise more than $1 million in one day and that’s where we want to go,” he added.
Shamrockin’ for a Cure at Verizon Wireless Amphitheatre is a nice reminder for the Bakers, the committee and all who are involved in the event that people want to help. “At this time of year, Jon and I get to reflect upon and appreciate the good things that CF has brought us. If my two oldest boys didn’t have CF, we certainly would never have been as philanthropic as we have become. We would not have met those people who have become the most important people in our lives right now. The number of good things that have come about because of CF far outweighs the bad things,” Baker said.
Tickets to Shamrockin’ for a Cure are $85 per person and include a wide variety of food, beer, wine and cocktails, giveaways and live music by local band “Hard- Crush.” Tickets are available now at shamrockinforacure.org.