Wednesday, May 21, 2008
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The Julie Fund

?Julie mcavinn didn’t get the answer she expected. Back in 2003, when this young Wellesley wife and mother of three finally received an accurate explanation for her persistent back pain, it had life changing implications. An energetic and active woman, Julie was faced with a devastating diagnosis of stage four ovarian cancer. The diagnosis affected all who knew her. But rather than helplessly wring their hands, Julie and husband Peter’s friends and neighbors gave as good as they got. Almost instantaneously, the McAvinns found themselves hugged tight by a community that went straight to work supporting every aspect of their family life. “I say it takes five people to replace a mother,” says Judy Paige, Julie’s mother. “The neighbors pitched in and made sure everyone got to their art lessons and soccer practice. People babysat. The children, I don’t think, ever missed a beat.” Friend Pamela Oswald Lewis agrees. “The outpouring of help was amazing. The neighborhood was unbelievable.”

The round-the-clock support meant that Julie and Peter could focus their efforts exclusively on battling an aggressive cancer than ultimately took Julie’s life a mere three months later. She was only 40 years old. But during Julie’s lengthy hospital stays, both were aware that their support system was a luxury not available to everyone suffering from long term, critical illness. “Julie and I kept saying ‘how do people do this?’” says Peter, “How do single women do this? Who helps people when they get into this situation? We just couldn’t fathom it.” The McAvinns were right. Many typically self-sufficient families can fall apart if one breadwinner or caregiver gets a difficult diagnosis. “It’s a matter of pride,” says Marie Elena Gioiella, the Social Work Clinical Team Leader at Massachusetts General Hospital (MGH). No matter what their situation, people, especially women, have trouble asking for help.” Ever intuitive and practical, Julie understood this dilemma and one day while stuck in the hospital turned to Peter and said “we have to do something to help these people in this situation” and the idea for The Julie Fund For Female Cancers was born.

“The genesis of The Julie Fund really came from Julie,” says Peter. “It gave Julie some relief that she was actually planning some events from her hospital bed. After Julie died, I had already committed to the Julie Fund because I just followed the path we had laid.” Peter knew that harnessing the passion of those who knew and loved Julie was going to give the fund a necessary kick-start. After consulting medical professionals, philanthropic organizers, and heads of various foundations, Peter felt ready to lay down his vision for The Julie Fund. He structured the fund to have an impact in three ways: first, in the funding of cancer research, including subsidizing the hiring of the most talented cancer research fellows and other major research expenses; second, for patient and family support, funding the additional non-medical expenses incurred by families of cancer patients that include transportation, food, day care, temporary housing, and other exceptional expenses that are a result of cancer treatment; and third, in education and awareness, by funding educational programs for health care professionals and the general public in order to raise awareness of cancer symptoms.

Once the framework of the organization was operational, there needed to be a high profile launch. “We got a group of us together one night and brainstormed and ended up with pages of ideas, anything from poker tournaments to a comedy night. We ended up with the Gala because it was fun and we know how to throw a party,” says McAvinn. The first Julie Fund Gala, held in October 2005, was fueled by the passion and frustration of those closest to Julie. “People felt so helpless. They wanted to know what they could do,” says Judy Paige, “in a sense it was an easy thing.”

The first Julie Fund Gala raised nearly $500,000. Even with all the positive feedback on a night filled with emotion and generosity, Peter McAvinn knew all the good intentions weren’t going to propel this fledgling organization into legitimacy. “I didn’t want to do this thing if it wasn’t going to make a difference,” says McAvinn. “To have staying power, you need to be a real organization that really accomplished things.” Dr. Michael Vasconcelles, who heads up the Scientific Research Board for The Julie Fund, was impressed with Peter’s concern that The Julie Fund’s disbursements be legible and easily understandable to donors. “He wanted to get a process in place that was transparent and clear to people,” says Vasconcelles. “He provides a lot of quiet leadership and is singular in his approach to the way the Julie Fund is currently structured.”

• The Third Annual Julie Fund Walk, Saturday, June 14th, 2008, 8:00 am at Artresani Park, Brighton

• The Julie Fund Gala, Saturday, November 1st, 2009, Westin on the Waterfront, Boston

• For more information, visit the website at www.juliefund.org

The research arm of the Fund is a good example. After reviewing more than a dozen top-notch research proposals, the scientific advisory board settled on two promising projects. “We wanted research that was tangible, that was in human trial stage, or going to trial,” says McAvinn, “we want to be part of a breakthrough.” Drs. Patricia Donahoe and Rosemary Foster, for instance, whose MGH laboratory was the recipient of disbursements from The Julie Fund, are working on groundbreaking research to isolate certain cancer stem cells that seem to be more resistant to chemotherapy and might lead to tumor relapse and progression. The idea is to find ways to eradicate these cells in women with ovarian cancer. Dr. Donahoe explains: “The Julie Fund has allowed us to explore this new area and how to define this cell stem population. We need to keep our noses to the grindstone and keep our perseverance up so we can get this to patients because we are convinced it will be highly effective if used in the right combination at the right time.” In a complete coincidence, Dr. Pat Donahoe happened to be a personal friend of Julie’s family from her years in Weston, and later she would visit Julie in the hospital and see the toll it took on her young friend. “Watching helplessly as a beautiful woman like Julie was so affected by this terrible disease made us all the more persevering, knowing that you have something that can potentially help,” Dr. Donahoe says.

But keeping an eye on the horizon for potentially life-saving therapies is only part of The Julie Fund’s mission. The organizers of The Julie Fund were haunted by the very real hardships faced by families who need to juggle finances, childcare, and daily responsibilities all while battling a devastating illness. “You know the expression ‘it takes a village to raise a child?’ Well, it takes a village to take care of one person going through cancer,” says friend Pamela Oswald Lewis. The Julie Fund, with the assistance of MGH’s social service department have a process to identify women whose situations have become unworkable because of their diagnosis. “If a person doesn’t fill a prescription because they need to pay rent, it becomes clear that something needs to be done,” says Gioiella of MGH. For instance, Anne (her last name is undisclosed to protect her privacy), a 36 year-old mother of two young children, was unable to work during her chemotherapy treatment for ovarian cancer. Because her disability payment was a fraction of her regular salary, Anne struggled to pay her bills. The Julie Fund was able to pay her mortgage payment and pay hospital transportation costs, thereby contributing to Anne’s ongoing recovery. “I don’t know what I would have done if not for this support at a time of crisis,” she says. To date, more than 50 women have benefited from The Julie Fund.

It’s this kind of impact that energizes Peter McAvinn and his three children, Christopher, 14, Paige, 11, and Jillian, 6. “Julie hated to see people suffer and the idea of The Julie Fund was to relieve some of the pain. She would see frustration and pain and think about the implications of that on a family and it would really bother her. We are doing good things in Julie’s name. And it’s nice to keep Julie in the forefront of our family conversations. When people talk about The Julie Fund, they are really talking about Julie.”

 

 

 

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