Welcome to the Board
August 1, 2012
Karen Hirsch has an understanding of the goals and the roles of serving on the board of the VF. She brings passion, desired experience and resources to help support our work.
— Cindy Webber, board member
Karen Hirsch knows first-hand the value of the VF. Since her son, Michael, was diagnosed with granulomatosis polyangiitis (GPA Wegener’s), she has seen with her own eyes how important it is for patients, families and medical professionals to have access to important information about vasculitis.
“We had so many questions: How sick was he? Who were the best in the field to treat him? Would he be able to continue to go to college away from home much less play football?” Hirsch recalls. “Cindy Webber, a VF board member, was absolutely the best lay person I talked to during that first month after diagnosis. She answered hours of questions and directed me to reliable VF resources that were available online. She offered names and numbers of other parents and patients with hopeful, successful treatment stories. The newsletters and the symposia offered by the VF were a great source of information.”
Volunteering is a family affair for the Hirsches – husband Dan and children Jillian, 22; Michael, 20; and Ellen, 17. Jillian started a non-profit in Peru that offers college test preparation, tuition and books to girls from an orphanage in Ayachucho. Hirsch hopes that Michael will also become an active volunteer with the VF.
As a new board member, Hirsch is focused on strengthening the VF by increasing membership and raising funds.
“I want to do everything I can to support my favorite people: my son and of course all the other patients with vasculitis, those physicians who treat them and especially those clinicians/researchers who are looking for cause, cure and new treatment options,” says Hirsch, who lives outside of Chicago. “Patients and caregivers have the opportunity to make a difference.”
Awareness and fund-raising
“It is very important for patients and families to raise awareness and funds for orphan or rare diseases like vasculitis, especially when support for these efforts is decreasing,” Hirsch continues.
“To increase the chances for patients to suffer less through earlier diagnosis, to offer clinicians the tools they need to properly treat patients with vasculitis and to help fund research on the application of new treatments or even the search for cause and possible cure, is vitally important. In addition, the treatments or cures we discover are often applicable to other diseases in the auto immune family or even cancer. The more we understand about the disease process, the better.”