Angelos Summer 2012 : Page 52
know what, if anything, they can do. The gift cards send a message to recipients that someone cares. “I was truly surprised when I started getting thank-you notes from recipients,” Emily says. “Over and over, they say just knowing someone cares means the world when you are going through cancer. That, and that so many people are affected in some way by cancer, is what motivates me to keep going.” Cameron Lee Ulrich, Director of Operations, KiDz1stFund, Kidz1stFund.com Kappa Alpha Cameron Lee Ulrich has found her calling. Since graduating from Florida State University 10 years ago, she has had more than 10 jobs, first in technology and then in politics where she changed jobs often so she could gain experience in com-munications, lobbying, fundraising and public policymak-ing. Along the way, she met Candi Fisher, wife of FSU foot-ball coach Jimbo Fisher, and this introduction led to what Cameron calls “an amazing opportunity to play a role in the fight to cure Fanconi anemia.” The Fishers established Kidz1stFund in 2011 after their 6-year-old son, Ethan, was diag-nosed with Fanconi anemia, a rare genetic disease that reduces the life expectancy of those who have the disease to an average of 24.7 years. Some live longer lives due to the efforts of the physician research community focused on the disease, which gives the Fishers and Cameron, now serving as the organization’s director of operations, hope and motivation to raise aware-ness and funds to support this research. Fanconi anemia often is not diagnosed or is misdiag-nosed due to the lack of awareness of the disease among physicians and the public. According to Cameron, the disease leads to bone marrow failure that necessitates a bone marrow or cord blood transplant, which increases a patient’s chances of developing a variety of cancers at a much earlier age than the general population. Some chil-dren with Fanconi anemia have no physical manifestation of the disease, while others have a variety of health issues, including short stature, deformities of the arms and hands, kidney problems, heart defects and hearing problems. Bone marrow transplant is the most common form of treatment, yet like young Ethan, 70 percent of all patients needing a bone marrow transplant do not have a donor in their families and must rely on a national registry of mar-row and umbilical-cord blood for a life-saving match. “The Fishers are not sitting back and letting this disease win, and they want to inspire others to do the same,” Cam-eron says. “Maybe one doesn’t have a family member with FA, but they still encourage everyone to say ‘I fight Fanconi.’ ” With their battle cry sounding, Cameron and the Fishers set about learning all they needed to know about Fanconi anemia and the intricacies — the laws and respon-sibilities — of running a nonprofit organization. Cameron has spent the first year promoting KiDz1stFund’s mission via social media, conducting bone marrow donor drives, planning fundraising events, managing volunteers and working with retail stores to sell merchandise and apparel. KiDz1stFund surpassed its initial goal of registering 1,000 people into the National Marrow Donor Program — Be The Match. “This is a great ac-complishment and will hopefully save lives since a bone marrow transplant is used to treat more than 70 illnesses, not just FA,” Cameron says. While at the University of Minnesota this spring for Ethan’s annual appointment, the Fishers delivered a check for $500,000. The university houses the single largest Fan-coni anemia treatment center in the country. Cameron says, “It was quite an exciting event, especially since Kidz1st-Fund was able to deliver the check after just six months of fundraising.” The Fishers also came home with encouraging news: Ethan’s bone aspiration showed no signs of further failure. He is holding steady and can even play baseball. KiDz1st-Fund will continue to “fight Fanconi.” Cameron says, “Our goal for the fundraising and awareness campaign is not a dollar figure. It’s a cure, so that Ethan and other kids with Fanconi anemia may lead full, happy lives.” Majoring in management information systems at FSU, Cameron served Kappa Alpha chapter as treasurer and chairman of community service and philanthropy. “I never would have thought that these positions would have foreshadowed my life today,” she says. Cameron advises KD collegians: “Do what makes you happy, and your calling, or niche, will come to you.” 52 | THE ANGELOS OF KAPPA DELTA kappadelta.org
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