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Shelly Kozicki

Quartermania Fundraiser for Mesothelioma Research

Labor Day has come and gone, taking with it the last of summer and ushering in the start of autumn. In most places, autumn is the season of harvest – a time to reap what has been sown so that it may nurture and sustain a community of people. The mesothelioma community is no different. For us, this is an ideal time to harness the energy and determination that have grown from our mutual commitment to a single goal: to find effective treatments for the disease that impacts all our lives.

 

The mission of the Meso Foundation is to provide funds for research projects that seek a cure for mesothelioma. For this purpose, donations at all levels – from individual contributions to organized fund raising events – are vital. The event to be held on September 6th, is an excellent example of how volunteers within the meso community can assist the Foundation in securing research funding. Chris Hahn, the Foundation’s Executive Director, is most appreciative of Shelly’s efforts. “The donations generated by this type of event are critical to meeting our goals” he acknowledges, “but equally important are the increased levels of awareness about the challenges of mesothelioma treatment. Additionally, interactions among event participants help to identify and mobilize various individuals, businesses, and organizations that are interested in supporting the Foundation’s mission.”

When they think of fund raising events, some people picture an elaborate affair that brings in thousands of dollars, But fund-raisers, like people, come in all shapes and sizes, and there is no one single formula for these events. Fund raising may be as simple as encouraging friends and family to donate to meso in lieu of a Christmas gift, or as relatively complex as organizing a dance or a bike race or a walkathon. According to Shelly, the biggest hurdle to overcome is “getting past the fear of trying.”  The most important thing to keep in mind is that the event should be fun for both the organizer and the attendees. Yes, there’s some work involved, but it should feel like a labor of love, and not drudgery.

In addition to raising funds for research, Shelly Kozicki has also been raising awareness, hope, and the spirits of her fellow community members for over a decade. It was in July of 1998 that her husband Craig was diagnosed with peritoneal mesothelioma, and given a prognosis of 6 months to live. From that moment on, Shelly fought alongside Craig as he battled for his life, through surgeries, chemotherapy regimens, infections, complications and recurrences. More than once she has been told that Craig would not make it through the night, or would not live another 6 months. Yet 10 years later, Craig is still here, and still fighting. He has lived to see his daughter, who was 12 when he was diagnosed, grow into adulthood, and in December, he will give away the bride when she marries her high school sweetheart.

“As long as Craig is willing to fight this cancer, I’m going to fight just as hard along with him,” Shelly says. She describes the vital role of caregiver in disarmingly straight forward terms: “You do what you have to do and more. You wish that you could take their pain away for just one hour. You push doctors and nurses to the limit for answers, especially if you think that something isn’t right. You sleep in chairs at their bedside, and walk a mile for a special soup just to see them eat something. “

Like so many caregivers, Shelly has had to consistently remind herself to take time for her own needs. “When your loved one is a meso patient,” she says, “caregiving can become 24/7, 365 days a year. It’s hard to make yourself take the breaks you need for rest, a shower, a meal, or to stop being strong for a minute and let yourself cry.” 

Because she knows only too well the toll mesothelioma takes on entire families, Shelly has been reaching out to help others since the earliest days of Craig’s disease.  While he was undergoing his initial treatment with Dr. Taub, Shelly worked with Mary Hesdorffer to link all the practice’s patients via a website so that they could communicate with each other. “I thought it was terrible and lonely not to have anyone else to talk to about this disease,” she recalls. Since that time, Shelly has continued offering support and hope, speaking to patients and caregivers from all over the country.

The more patients and families she met, the more determined Shelly became to help find a cure - not just for Craig, but for all those in the meso community she had come to know and care about. It was this desire to do something tangible that led her into fund raising activities. “I have seen way too many people lose their spouse, their child, their parent to this disease,” she says.”It is for them, and for the people who are going to be told tomorrow, next week, or next year that they have this horrific cancer. I do it for the ones to come.”

Since she began, Shelly has raised over $60,000 for mesothelioma research, and will soon reach the $100,000 mark. “It’s a matter of starting small and seeing how easy it is and how willing people are to help,” she advises. “I look at what others are doing, and go to some of the events to see how they are organized. “It helps to have great friends who can be counted on to help, and to plan in advance, especially if the event is an ambitious one”, says Shelly. Dividing responsibilities (tickets, signs, auction items, etc) and holding frequent meetings ensures that things stay on track and all the bases are covered.

Shelly says she isn’t waiting around for the government to lend a hand and find a cure. She and others like her throughout the meso community are determined to forge ahead so that effective treatments might be made available sooner rather than later. At the Foundation’s annual Symposium in 2007, Shelly addressed the assembled researchers and doctors with the impassioned plea: “if we find the money, won’t you please find a cure?” Few who have met this committed caregiver would ever doubt she means what she said!

Christopher Hahn, Executive Director of the Mesothelioma Foundation, echoes Shelly’s sentiments and adds a few of his own observations. “We do what we can to convince various government agencies of the critical need for funding,” he says, “but we can’t afford to wait for others to step in and solve the problem for us. You have only to talk to patients and families, and hear the desperation in their voices to realize how critical time is for them. Time is also critical for all those who will get sick from exposures that have already happened and continue to happen every day. While we have come a long way in terms of research, we have not yet reached our destination of a cure. The clock is ticking for too many people – we can’t afford to sit back and wait. Shelly epitomizes the determination of the meso community to find optimal treatments for the benefit of those who are sick now, and all those yet to come. She is an inspiration to all of us at the Foundation, and to the community that she serves with such abiding compassion and commitment.”