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 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 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 . 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 , 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, . 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 , 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. A charitable gift annuity enables the next generation of cardiologists and 443-287-7384 or [email protected] if you cardiac surgeons to advance treatments for cardiovascular conditions and provides lifetime income to have questions or need additional help.

you or a loved one, along with significant tax benefits. Take advantage of recently announced higher To make a contribution to the Heart and Vascular payout rates for a new charitable gift annuity. Contact the HVI Development office today for more Institute, use the contribution envelope enclosed or information, or visit www.jhu.planyourlegacy.org/calc.php to calculate your income and benefits. give online at https://secure.jhu.edu/form/heart

2 • HOPKINS PULSE • FALL 2018 WHAT INSPIRES GIVING? Giving from the Heart Meet Richie and Kathy Amato

Richie: hen Richie Amato was 50, he and his Roger Blumenthal at the time was wife, Kathy, asked Richie’s physician involved with a yearly fundraiser called Heartfest. about doing a baseline stress test just That’s what actually started our giving. We went to check things out. The test revealed to the first Heartfest in 1995. From there, we W graduated into donating every year. some issues that required follow-up. Richie, CEO Q: What has inspired you to continue of O.S.T. Trucking in Baltimore, decided to seek giving, year after year? care at Johns Hopkins. After seeing cardiologist Kathy: Roger Blumenthal, M.D., he was referred to We have a great rapport with Dr. cardiac surgeon William Baumgartner, M.D., who Blumenthal. He is Richie’s cardiologist to this performed a double bypass operation in September day. Through learning about the heart center, we 1994. realized the importance of research. We made a Now living in Crofton, Maryland, the Amatos decision to put our charitable donations each year say they developed close bonds with both physicians toward the Johns Hopkins Ciccarone Center for and have been loyal supporters of the Johns Hopkins the Prevention of Heart Disease because of the Heart and Vascular Institute since 1995, donating great service we received, and continue to receive, in recent years directly through their individual at Johns Hopkins. Without heart research, a lot retirement accounts. They spoke recently withPulse . of folks, my husband probably included, wouldn’t Q: Can you tell us about your experience be here today. with the doctors and staff members at Q: How do you feel that your gifts have made an impact? Johns Hopkins? Center. They have done so, because we believe so Kathy: We feel that without contributions like Kathy: We came to Johns Hopkins because much in Johns Hopkins and the research and the ours, the research wouldn’t happen. For example, we knew its reputation. We were very fortunate care that they provide. it took a lot of research to develop the implantable to be introduced to Roger Blumenthal, who we Richie: I would tell them that, one day, I think defibrillators that have saved so many lives. Without developed a great relationship with, and we were researchers at Johns Hopkins are going to cure research, there wouldn’t be implantable defibrillators. more than fortunate to have Dr. Baumgartner do cardiovascular disease. n Richie’s surgery. Dr. Baumgartner was absolutely (See related story on page 2.) Q: What would you tell others wonderful. He was a skilled doctor and so humble, Read more Pulse articles online at considering a gift to the Heart and Vascular with a wonderful bedside manner. He made us feel so bit.ly/HopkinsPulse. Institute? comfortable. Q: How did you become donors to Johns Kathy: For the last several years, we have asked Hopkins? our family, in lieu of gifts, to give to the Ciccarone

SNAPSHOTS OF SUPPORT

Dash 4 Dowd Memorializes Classmate, Supports ARVD/C Students from Holmdel High School in Monmouth County, New Jersey held a 5K fundraiser to honor the memory of their classmate, Jack Dowd, and to support the Johns Hopkins ARVD/C Program. Jack tragically passed away in September 2017 from ARVD. Front row, from left to right: Jess D’Agostino, Shelley Merhav, Jess Kaden and Casey Dowd. Back row, from left to right: Jordan Gilbert, Alec Licato, Arun Movva, Alok Malhotra and Cardiac Surgery Leaders Honor Bill Evan Smith. Baumgartner

Pioneering cardiac surgeon William Baumgartner Board Members and Faculty Convene was honored in June for his 36 years of exceptional service to the Johns Hopkins Medicine community. at the Fall Meeting Many of Johns Hopkins’ past and present leaders Members of the Cardiovascular Advisory Board and in cardiac surgery joined Dr. Baumgartner at his faculty from the Heart and Vascular Institute met on retirement dinner on June 1. From left to right: October 5 for their fall meeting. Front row, from left Robert Higgins, chairman, Department of Surgery; to right: Fritzi Hallock, Loretta Downey and Jennifer Jennifer Lawton, chief of cardiac surgery; Bill Lawton. Second row: Jonathan Myers, John Darvish, Baumgartner, former chief of cardiac surgery; Sharon Akers and Michael Brodsky. Third row: Chris Vincent Gott, former chief of cardiac surgery; and Helmrath and Thad Shelly. Fourth row: Ron Berger, Bruce Reitz, former chief of cardiac surgery. Dick Nielsen and Ed Kasper.

HOPKINS PULSE • FALL 2018 • 3 FOCUS ON FACULTY

through a ventricular assist device (VAD) or other The Mirowski Legacy: One Family’s A Reinvigorated mechanical circulatory support system. History of Tenacity, Ingenuity and Kilic is confident that soon, surgical therapy will Generosity Heart Transplant level the see-saw of outcomes for sicker patients and (continued from page 2) start its tilt in the other direction. LVAD design is Program steadily improving, for example. Also, Kilic “This is the best way to keep our parents’ says, there’s research on new materials. memory alive,” says Rosengard. “It honors our ardiothoracic surgeon He ticks off other changes: “We now father’s mission of bringing a novel idea to the Ahmet Kilic is sharply see our advanced patients earlier as a patients and recognizes our mother’s invaluable aware that he stands at team,” Kilic explains, “and we’re more support.” the midpoint of a see- often introducing the pumps earlier, “The Mirowskis’ legacy of personal, professional C when people are less sick.” and philanthropic contributions to the Heart saw, one tilting downward. Kilic was hired in 2017 as the “As we solve the shortcomings and Vascular Institute cannot be overstated,” says Director of Johns Hopkins’ Heart of device therapy, guided by our Ronald Berger, interim director of the Division Transplantation and Mechanical outcomes research, we can expect of Cardiology at Johns Hopkins. “Their collective Circulatory Support Program for his procedures to become more routine,” he commitments continue to encourage the kind of art and skill in transplanting hearts and adds. “So far, I like best care as opposed to innovation in cardiology for which Dr. Mirowski expertise in matching recipients with donors. If most care, and that is absolutely what we strive for was so well-known.” n n an organ is unavailable in a timely manner, the at Hopkins—it’s our bottom line.” decision can be made to pursue surgical therapy

Non-Profit Org U.S. Postage PAID Permit No. 5415 Baltimore, MD HopkinsPulse Johns Hopkins Medicine Heart and Vascular Institute Marketing and Communications 901 S. Bond St., Suite 550 Baltimore, Maryland 21231 www.hopkinsmedicine.org/heart_vascular_institute/ This newsletter is published for the Johns Hopkins Heart and Vascular Institute by Johns Hopkins Medicine Marketing and Communications Heart and Vascular Institute Jennifer Lawton, M.D., Director of Cardiac Surgery Gordon Tomaselli, M.D., Director of Cardiology Marketing and Communications Lisa Rademakers, Editor Karen Blum, Jennifer Lawton, Lisa Rademakers, Writers Rachel Sweeney, Designer; Keith Weller, Photographer Questions or comments about this issue? Call 443-287-7834 or email [email protected]. © 2018 The Johns Hopkins University and The Johns Hopkins Health System Corporation

HopkinsNEWS FOR FRIENDS OF THE JOHNS HOPKINS HEARTPulse AND VASCULAR INSTITUTE FALL 2018

1 2 3 Rooted in The Mirowski Legacy: Giving from the Philanthropy, One Family's History Heart: Meet ARVD/C of Tenacity, Ingenuity Richie and Kathy Inside Program Thrives and Generosity Amato 20 Years Later