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Download Issue HopkinsNEWS FOR FRIENDS OF THE JOHNS HOPKINS HEARTPulse AND VASCULAR INSTITUTE FALL 2018 Rooted in Philanthropy, ARVD/C Program Thrives 20 Years Later hen John Campanella was diagnosed with early symptoms of arrhythmogenic right ventricular Wdysplasia/cardiomyopathy (ARVD/C) at Johns Hopkins 20 years ago, the only hospitals John and Kathy Campanella with specialized ARVD/C centers were in Padua, garnered funding to launch the Italy, and in Arizona. Campanella was concerned Johns Hopkins ARVD/C Program. because his father, a former linebacker and general manager for the Baltimore Colts, died of the condition (then thought to be a heart attack) in Thanks to such support, electrophysiologist family.” his mid-30s. His sister Carrie, also an athlete, died Hugh Calkins opened the Johns Hopkins The Johns Hopkins ARVD/C program, which suddenly of the condition after riding a horse. She, ARVD/C program for research and treatment of has become the biggest of its kind in the world, too, was in her mid-30s. the rare, inherited heart muscle condition that can will celebrate its 20th anniversary in May 2019. The Campanella and his wife, Kathy, visited both cause sudden death in young athletes. Calkins program has evaluated more than 2,500 patients from ARVD/C centers and proposed that Johns Hopkins hired cardiology fellow Hari Tandri and a genetic all over the world and provides information through establish a program in Baltimore. The Campanellas counselor, while Kathy Campanella linked the its website, newsletters, annual reports, an annual leveraged family funds and contacted investor Jack program to a patient support website she had started, patient and family conference, and via Feeling the Bogle, an ARVD/C patient who founded and served arvd.com. Beat, which is a blog of patient stories. Physicians as CEO of The Vanguard Group. Bogle provided John Campanella says he took advice from the affiliated with the program have published more than funds to help launch the program. The Campanellas late Johns Hopkins geneticist Victor McKusick, who 150 research papers about the condition. All these also garnered support from others, such as the family told him to leave no rock unturned to support the efforts have been made possible by donations. of supermodel Niki Taylor, whose younger sister program. “What we learned is that patients can come “It’s been unbelievably successful,” says Calkins, Krissy died from ARVD/C. together and work with their friends and families ARVD/C program director. “From a terrible tragedy to raise money through smaller events,” he says. came this program that has saved thousands of lives Many embraced the philosophy. The Healing Hearts all over the world.” Foundation, founded by nine friends of a deceased Current research priorities for ARVD/C include ARVD/C patient, has held several events including identifying the genes responsible for the 30 percent bull and oyster roasts and golf tournaments, raising of patients who have unexplained ARVD/C; more than $119,000. further understanding the impact of exercise on Funding for rare diseases is difficult, says Tandri, disease progression; promoting disease prevention now the center’s co-director. “It’s the motivation and for families who are at risk; and developing more the commitment of people with the disease, and their advanced treatment regimens. Through the support families, that really drives this engine forward.” of grateful patients, families and friends, the Johns Donors Andrew and Sandra Cohen of the Cohen Hopkins ARVD/C team will have the necessary Family Fund find the experts in the ARVD/C resources to continue this research and persist in their program help to attract donor support. “Dr. Tandri efforts to achieve the ultimate goal: finding a cure for is a superior doctor not only in terms of his technical this rare, devastating disease. n The Johns Hopkins ARVD/C team says, “Thank skills and medical knowledge, but also in his equally you!” From left to right: Crystal Tichnell, Hugh important compassion and understanding of the To make a gift to the ARVD/C program, visit Calkins, Brittney Murray, Hari Tandri and Cindy unique impact of ARVD to the patient and the bit.ly/hvigift. James. CHIEF’S CORNER GIVING THROUGH THE GENERATIONS Jennifer Lawton, M.D. Chief of Cardiac The Mirowski Surgery Legacy: One Family’s History he Division of Cardiac Surgery at Johns Hopkins is thriving! I have of Tenacity, Tbeen in Baltimore for just two years now, and I am honored to be at Johns Hopkins, which celebrates its 29th Ingenuity and year ranking among the top five hospitals in the country. Johns Hopkins is currently Generosity ranked #3 in the nation and #1 in Anna and Michel Mirowski Maryland by U.S. News & World Report. Cardiology and Cardiac Surgery rank #11 in the nation. In the Division of Cardiac Surgery, oday, about 800,000 people in the U.S. rely on patients like Heller. He began to conceive of how our motto is We CARE: We are implanted defibrillators to protect them from to miniaturize the external defibrillator and make conscientious, accountable, respectful potentially fatal cardiac arrhythmias. They it completely automatic, thus permitting patients to and engaged. By modeling these values, Tmight not know that Michel Mirowski, the survive outside a hospital. Unable to find support for we have successfully begun to establish inventor of the lifesaving devices, barely escaped the his invention in Israel, he returned to Baltimore. Holocaust with his own life. In 1968, Mirowski became the first director of the stability and continuity in the division. We have 12 faculty members, and eight While his name is now associated at the Johns coronary care unit at Sinai Hospital of Baltimore. are clinically active. We are especially Hopkins Heart and Vascular Institute with a He devoted great effort and nearly two decades to delighted to have three new adult cardiac professorship, lectureship, award and fellowship, his developing his invention. “He was lucky to have my surgeons in our division: Ahmet Kilic, influence in cardiology is recognized worldwide. mother by his side because I am not sure he could Stefano Schena and Dan Choi. Mirowski was born in Warsaw, Poland. The Nazis have developed the implantable defibrillator without Our mission in cardiac surgery invaded in 1939, imprisoning him and his family and her. She always cheered him on and encouraged him,” is to provide the highest quality, others. At 15 years old, Mirowski escaped the Warsaw says Rosengard. compassionate care to our patients. We ghetto and fled to the Soviet-occupied region of Bringing the implantable cardioverter defibrillator have seen growth in our structural heart Poland. Daughter Ariella Rosengard shares that her to patients was not easy. Funding was only part of the program, reinvigoration of the heart grandfather’s last words to his son expressed hope that problem. Convincing the cardiology community was transplant and mechanical circulatory he become a physician. even harder; manuscripts were routinely rejected by support programs, and enhanced When Mirowski returned to Warsaw at the war’s specialists in the field, and experts scoffed at the idea. structure and standardization of our end, he learned that his family had been killed, But eventually, Mirowski found financial support and extracorporeal membrane oxygenation including his 8-year-old brother. He honored his a close team to help him, including Morton Mower, program. We are also fortunate to have father’s wish and enrolled in medical school in Lyon, Alois Langer and Steven Heilman, all of whom were robust basic science and clinical research France, where he met his wife, Anna. named to the National Inventors Hall of Fame in programs led by our nationally recognized The two moved to Israel for Mirowski’s medical 2002. faculty. residency. There, says Rosengard, he met Harry Prior to Mirowski’s death in 1990, he was able to Our division’s ability to provide the best Heller, chief of medicine at Tel HaShomer Hospital, see his device implanted in thousands of people, many patient care, foster innovation, promote who became his mentor. At one point Heller of whom thanked him for saving their lives. education and encourage scientific inquiry recommended that Mirowski complete a fellowship To honor her husband’s contributions to would not be possible without the help of with Helen Taussig, a pioneer in pediatric cardiology cardiology, Anna Mirowski established the Michel our donors and appreciative patients. We at The Johns Hopkins Hospital, which he did. Mirowski, M.D. Professorship in Cardiology in are extremely grateful for your generous Mirowski returned to Israel from Baltimore in the 1998, as well as the annual Michel Mirowski M.D. support. early 1960s. Soon thereafter Heller began suffering Lectureship in Cardiology, which will be held on Dec. from ventricular arrhythmias. Unfortunately, Heller 7, 2018. Watch a video about a patient chose not to use an external defibrillator, resisting the The Mirowskis’ daughters, all physicians, who underwent a complex inherent limitations of being hooked to the machine established the Michel Mirowski, M.D. Discovery emergency surgery by Jennifer and remaining in a hospital interminably. He soon Award in honor of their parents, to support a Lawton at bit.ly/DrLawton or succumbed to ventricular fibrillation. physician-scientist doing early research in the scan the QR code. The death of his key friend and mentor prompted specialty. Mirowski to search for another treatment option for continued on page 4 Make Your Gift Today Make a World of Difference We want to hear from you. Contact Lisa Hammann We all want to find that balance, a means to give back to the Heart and Vascular Institute and still or Adrienne Rose in our development office at meet our own financial goals.
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