Myocarditis Following COVID Vaccine - KNOWLEDGE NURTURES HOPE
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KNOWLEDGE NURTURES HOPE FALL 2022 / VOLUME 22 / NUMBER 2 Dedicated to Providing Information and Support Related to the Causes, Symptoms, Diagnosis and Treatment of Myocarditis and Sudden Death MYO CARDI T IS F O U N D A T I O N UPDATE ON COVI D- 19 Myocarditis Following COVID Vaccine There has been so much novel methods of disease confusion on what is the true prevention and treatment. incidence of Myocarditis post Vaccines that used a broad range COVID-19 vaccination over the of different technologies had past few years. As you know, been developed with an research takes time. unprecedented speed, were Information needs to be tested in large randomized collected and evaluated before clinical trials, and utilized broadly the information can be once Emergency Use documented and shared. Authorization had been granted to reduce the spread of the Dr. Bettina Heidecker, one of infection with the goal of our Myocarditis Foundation achieving immunity across the Board members, conducted a entire population. As of recently, study with 17 other myocarditis more than 10 billion doses have researchers across Europe and been administered worldwide. the United States on the incidence of Myocarditis One of the most discussed following COVID-19 vaccine. complications of the vaccines This publication put into affecting the heart is perspective the incidence, myocarditis and/or pericarditis. presentation, diagnosis, The goal of this current review pathophysiology, therapy, and article is to provide clinicians outcomes. It is supported by and scientists with an objective the Heart Failure Association of and comprehensive overview of the European Society of the data regarding the clinical Cardiology (ESC) and the ESC presentation, diagnosis, Working Group on Myocardial pathophysiology, and and Pericardial Diseases. It was management of myocarditis recently published in the following the most widely European Journal of Heart utilized COVID-19 Vaccines. Failure 2022, and we will share as Cardiac MRI is not groups studied, the overall risks Rates of vaccine-associated commonly performed even in of COVID-19 related some of the highlighted points myocarditis vary by age and sex suspected cases, and not at all hospitalizations and death are with you below. with the highest rates in males in asymptomatic and mildly hugely greater than the risks As we know, the rapid spread of between 12 and 39 years. The symptomatic patients. CMR is from post-vaccine myocarditis. coronavirus 2019 (COVID-19), clinical course is generally mild the best non-invasive diagnostic which overwhelmed healthcare with rare cases of left While they overall believe tool with endomyocardial systems around the world within ventricular dysfunction, heart through the studies that biopsy being restricted to weeks, required the rapid failure and arrythmias. Mild COVID-19 Vaccines are very severe cases with heart failure development and introduction of cases are likely underdiagnosed and/or arrythmias. In all age (Continued on Pg 2)
U PDATE ON COVID - 19 Myocarditis Following COVID Vaccine (continued) safe, there is a low but Overall, the risk/benefit ratio However, there is a greater Also, there is not a clear sense consistent, tangible rate of hugely remains in favor of need to better understand the of the long-term implications of post-vaccination myocarditis vaccination for most classes of mechanisms if cardiac injury post-vaccine myocarditis. and/or pericarditis identified in ages, especially in older adults. from these vaccines. Why and Future work should focus on several national and how precisely do COVID-19 For the medical community, a the mechanistic basis for international level studies. vaccines cause myocarditis and key red flag is in identifying myocarditis and in identifying Whilst there can be no room myo/pericarditis, and how do affected individuals (i.e., those at an increased risk of for complacency, fortunately, they differ from COVID-19 particularly young men) adverse outcomes in need of the majority are mild and not infection related myocarditis? presenting with chest pain, closer long-term monitoring. associated with hospitalization palpitations, or shortness of In those that have developed or severe complications. This Please go to the Blog section of breath within 7 days of the myocarditis after the first dose risk must be balanced against our website, www.myocardit- second dose of an mRNA of the vaccine, there needs to the much greater risk of death, isfoundation.org to read the vaccine. Management is largely be more evidence on when pulmonary, vascular, and full article. supportive for most affected they should receive a second cardiac complications by the individuals unless there is dose of the vaccine. COVID-19 virus itself. evidence of heart failure or major arrhythmic episodes. EV E NTS 2022 Family Meeting at National Harbor, Maryland meeting. They were so touched more corporate sponsorships in by the family stories and what the future. Not only can they the Foundation was doing to help us carry out our mission help them navigate through but for them to also learn more their concerns related to about the Myocarditis myocarditis. They decided to Foundation and what we do to stay for the whole meeting and help those who are affected by participate in the break-out the disease. round table discussions both We look forward to our next for the survivors and the in-person Family Meeting, families who lost loved ones. which is being planned for early We had much more interest October 2023 near the Our Family Meeting was similar situations. They had no from the medical community, Huntington Convention Center successfully held on Friday idea how much that having this which I attribute to the recent of Cleveland, Ohio. September 30th & Saturday opportunity to participate and outpouring of interest in The tentative dates are: Friday October 1st, despite the havoc speak with other families, myocarditis, post pandemic. Dr. October 6th & Saturday that Hurricane Ian caused to specialists, and researchers Cooper shared that all the October 7th, 2023. our Agenda. would mean to them when they corporate sponsor signed up to attend. representatives who attended Come see and hear from our While a few of our participants, and participated, later other families, specialists and as well as a few of our Not only were the families approached him at the HFSA to researchers, and plan to see the speakers, had to back out of impacted positively, the relate their positive feedback Rock & Roll Hall of Fame while attending due to emergencies specialists and researchers were on the meeting. We are looking you are there! at home due to the storm, we as well. Only two of our forward to planning for even had a very successful meeting. speakers had knowledge of Other specialists stepped in to how our meetings are planned help us out which we sincerely out around our patients and thank them for. families as well. They too, were so grateful for the knowledge There were only two families given them about our family who were previous attendees. and patient stories, and how Most of our attendees had never we support them. Our attended the Foundation’s corporate sponsors, who were in-person meetings before and initially planning on only expressed their thanks for participating on Friday and for bringing them together with a short time on Saturday, asked others who are dealing with if they could stay for the entire 2
EVE NTS The 15th Annual Myocarditis Foundation Golf Outing was a Huge Success! personal experience with a Giant standing ovation for his work Cell Myocarditis (GCM) patient at the Foundation and the 15 when he was in his medical years of the Golf Outing’s residency that became the focus of success. It has become the his professional energy thereafter. largest fundraiser for the MF His work in GCM research led to and looked forward to by so treatments that have made many repeat participants. dramatic improvements in the lives The John Philips’ Foundation of GCM patients. From GCM attendees spoke about their usually being diagnosed on friend, John Mello, for whom autopsy, it now has an overall their foundation was formed survival rate of 90% at 1 year after for and who died a few years diagnosis. ago of Viral Myocarditis. They Candace Moose, Co-Founder spoke about how the of the Myocarditis Foundation, Myocarditis Foundation was spoke about how Joseph able to help and support them Rumore came to join the in the early days of dealing with Myocarditis Foundation soon their loss. They now work on after its inception and all that helping raise awareness and he has done to help move the research dollars to prevent MF forward over the past 16 others from suffering the Monday July 15th was the 15th Public Accountants, the Linn years that he has been a part of effects of myocarditis. Annual Myocarditis Foundation Family, RT Specialty Group, Peter it. The entire room gave him a Golf Outing at Arcola Country Christou / First Trust, Home Well Club in Paramus, NJ. We had Cares, Jordan Wright, Quality 120 golfers, many of whom Auto, Cardiol Therapeutics, Inc., were returning supporters of Kiniksa Pharmaceuticals, NJM the Foundation. 30 additional Insurance Group, Albergo Law supporters joined us for the Group, Liberty Contracting, B&M dinner, raffle / silent auction Market, Whalen & Ives, John portion of the evening. Philip Foundation, James & Candace Moose, Joseph & We could not have accomplished Genevieve Rumore, Michael A. the success of our fundraiser, a Linn, Mike Petruccelli, Sr., Jack day of golf and fun, without the Conover, and Donald Onorato. support our sponsors, participants, and volunteers. Dr. Leslie Cooper was to be our Guest Speaker, but unfortunately The sponsors of the event was unable to attend. Instead he included: sent his speech which was shared Town Title, Morgan Stanley The by Genevieve Rumore, the Trilogy Group, MSPC Certified Executive Director. He spoke of his UPDATE Congratulations To Dr. Delisa Fairweather, PhD. And Dr. Katelyn Bruno, PhD. On Their Distinguished HFSA Fellowship Designations Fellowship is one of the most Dr. Fairweather, PhD., is distinguished designations the Director of Translational Heart Failure Society of America Research in the Dept. of (HFSA) can offer its members. It Cardiovascular Medicine at is a tremendous recognition of Mayo Clinic in Jacksonville, professional achievement and Florida. She has worked with contributions to the society. The the Myocarditis Foundation for designation is based on many years and is on our outstanding credentials, Medical Advisory Board. She achievements, and contributions has recently received a RO1 to heart failure medicine. (Continued on Pg 4 3
EV E NT The King of Hearts Fundraiser, in Celebration of a Life Well Lived! Sunday October 16, 2022 was the 3rd King of Hearts Fundraiser in memory of Lee Andrew Hirsch, which was held at Nicotra’s Ballroom in the Staten Island Hilton, NYC, to benefit the Myocarditis Foundation. There were 133 attendees who participated in the festivities. So many generous donations were made from 114 donors to enable the 104 amazing gift baskets for the raffle tables! It took a village of family and friends to put this all together, with Giustina Schiano as the chairperson. Featured Guest Speakers included: • Dr. Leslie Cooper, MD, the Foundation’s Chief Medical Director, and Co-Founder, The Myocarditis Foundation who is the Chair of the presented an award to Cardiovascular Medicine Giustina Schiano for all her Dept, at Mayo Clinic, Florida. efforts in raising awareness for Myocarditis and the • Dr. Danette Flint, MD, funding needed for Dr. Flint’s Cardiologist and Myocarditis fellowship grant. The funding Researcher at enabled Dr. Flint to have Dartmouth-Hitchcock dedicated research time Medical Center, who was during her critical care awarded the Myocarditis fellowship and early faculty Foundation’s Fellowship career to pursue research on a Grant in 2019, in memory of domino effect, promoting don’t wait two years for the larger scale, using a database Lee Andrew Hirsch. ongoing research beyond its next one, we want to see you of more than 40,000 patients. initial scope. again next year! • Candace Moose, She will be submitting a Co-Founder of the manuscript for publication this Some comments from the The Foundation thanks Myocarditis Foundation, a month on her research. The attendees were: It was a Giustina Schiano for all her Giant Cell Myocarditis funding provided by the first-class affair; they were efforts to make this such a Survivor and Heart Myocarditis Foundation in impressed that the Myocarditis successful event! Transplant Recipient. honor of Lee Andrew Hirsch Foundation was present and has had and will have a engaged in the event; Please U PDATE Congratulations To Dr. Delisa Fairweather, PhD. And Dr. Katelyn Bruno, PhD. (continued) Grant from the National “standard of care”. Her RO1 Physiology and Aging and The Myocarditis Foundation Institute of Health to further grant research is on Sex Center for Regenerative would like to congratulate and her research. Funding for this Differences in Mitochondria. Medicine at the University of thank them both for all that type of grant is extremely Florida. She too has worked they have done to further the Dr. Katelyn Bruno, PhD., is an competitive, and only 10% of with the Myocarditis science of Myocarditis. Assistant Professor of the grant requests are funded. Foundation in various capacities Cardiovascular Medicine in the Often an RO1 grant is behind for several years and is currently Division of Cardiovascular many “best practices” and the Secretary to the Medical Medicine (Department of interventions considered Advisory Board. Medicine), Department of 4
FUNDRAISE R A Big Sister’s Gift to the Myocarditis Foundation Little Brother: Mark Ryan Summers was a 17-year-old high school senior set to graduate that year, Class of 2012. He was into everything tech and was amazing with a computer. He loved playing card games with his friends and was the best son and brother his family could ask for. Mark wasn’t feeling well for a few days, so on Tuesday February 7th his mom took him to the ER because he was complaining of some chest pain along with just feeling sick. They did an EKG, and were told that everything was good. The ER sent him home with the advice of taking some cold meds and Tums. On Sunday February 12th, 2012 Mark passed away peacefully in his sleep. While and young adults, then maybe further to see the real cause of in 2012. Adam and Jodi his family believes that things would be different today Mark’s chest pain… decided that for their wedding, everything happens for a and Mark would have been they would ask guests not to reason, had those doctors at On the other hand, maybe the physically at their wedding. bring cards filled with money or their local hospital been more damage to his heart was to bring gifts. They felt that aware of Myocarditis in children If only those doctors had done already too much. They will everyone’s presence on that day a Troponin Level or looked never know… was truly a gift in and of itself. This is why the Summers’ family However, if their guests felt the feel the work of the Myocarditis absolute need to gift them with Foundation is so important. something, they asked them to Awareness is key! please donate to the They enjoy talking about Mark Myocarditis Foundation in any chance they get… it keeps memory of Mark. his memory alive in all of them. The Myocarditis Foundation It also keeps the awareness of received over $3,000 in Myocarditis going! memory of Mark! Big Sister: Jodi and Adam are extremely Jodi, Mark’s older sister, was thankful to everyone that planning her wedding to an donated and very proud to do amazing man named Adam. their part in raising support Although Adam had only met for the Myocarditis Mark a few times, he knew Foundation so that they can how important he was to their continue to do all that they do family. Adam talks about him for patients and families to others to spread the affected by Myocarditis. awareness as well. Congratulations and many Mark’s mother, Susan Summers thanks to the new Mr. & Mrs. and his sister Jodi have been Adam Pattisall. huge supporters of the Foundation since finding it when Mark passed away back 5
EDUCAT ION Myocarditis Study The Myocarditis Study on Anxiety myocarditis. We truly need to This research study is being much for your time and and Depression, in conjunction show how impactful this disease done at the Mayo Clinic and completing the study. with the Mayo Clinic, continues is all around. has zero effect on your clinical Daniel G. Smith to enroll participants. At our care or any caregiver’s future PLEASE consider participating in Associate Clinical Research recent Family Meeting, in health care at Mayo Clinic. this very important study. Even as Coordinator National Harbor, Maryland, we With that said, if you can think a caregiver of a current or heard from many of our of any Caregiver, parent, Department of Psychiatry & previous myocarditis patient. This participants that not only do the spouse, friend, sibling that Psychology vital information will be used for patients, but the caregivers as might be interested please give Worldwide help of Myocarditis Smith.Daniel3@Mayo.edu or well, have been suffering from them Daniel Smith’s contact Patients and Caregivers. 507-255-0760. the stress of dealing with information. Thank you so B OARD OF DIRECTO RS Myocarditis Foundation Welcomes New Member To Their Board Of Directors Jaime Giani has been following Please join us in welcoming the Myocarditis Foundation for Jaime to our Myocarditis a few years since the loss of her Foundation Family and Board of 5-year-old daughter, Millie Directors. We know that her Rose, to Viral Myocarditis and breath of experience and Sepsis in 2019. She was understanding of legal matters devastated as any parent would will provide additional be and decided that she leadership in moving our wanted to raise awareness for mission forward! myocarditis and support the mission of the Myocarditis Foundation in memory and honor of Millie Rose. Jaime is an attorney and federal court administrator in Arkansas. She is married to Patricio and has two other children, Nora and Gio. Jamie Giani , Director Millie Rose 6
MYO CARDI T IS F O U N D A T I O N Dear Friend of the Myocarditis Foundation, This past year we have had a flood of visitors to our website looking for information on myocarditis as well as a large increase in emails and phone calls into the office for information that they can’t obtain anywhere else. We pride ourselves not as a “donation” based website, but as the most current, relevant information and help site. We do not ask for donations as others so often do such as…”If you liked what you have learned, please consider making a donation to ….”. The Myocarditis Foundation website is packed with information, and we would hope that people would understand that the only way we can continue to provide help this way to those that reach out for it is through donations. We don’t have any other form of revenue other than a few corporate grants that we solicit for various specific events, and those are not guaranteed. If we had even a dollar from everyone that visits our website, we would be so much more secure in ensuring that we could continue to do what we do, for the thousands that need us. Perhaps this has happened to you recently or in the past? When people are lucky enough to be given the diagnosis of myocarditis and discharged home, they always comment that they do not receive much information at all, just to “take it easy”. Then they go to the computer and type in myocarditis. They find us at the Myocarditis Foundation, our website, email, and phone number. They so frequently tell us that they have learned more from us and our website than they have from the doctor or the hospital. Sadly, the state of our economy after the COVID Pandemic has hurt our donation numbers and the dollar amounts of them as well. We are asking this year, if you could spare even a small amount as a donation on a monthly recurring basis, not only would it help keep our mission going but it would help those thousands of people who seek out the information and help that they so desperately need about myocarditis while they are going through it. Please remember these statistics: Myocarditis is the 3rd leading cause of Sudden Death in Children & Young Adults and accounts for 45% of Heart Transplants in the U.S. We’ve lost too many to this dreaded disease…please help us stop this. Please be there for us, for those that suffer, and for the families of those that have succumbed. To continue our commitment to battling myocarditis, & bringing a 24/7 service response, we need your help. Myocarditis Foundation is recognized as a Platinum level charity. I hope you will consider making-a-donation today to support our ongoing efforts. THANK YOU! 7
KNOWLEDGE NURTURES HOPE FALL 2022 M Y O C A R D I T I S F O U N D AT I O N Board of Directors 2022 JOSEPH RUMORE BETTINA HEIDECKER, MD Chairman of the Board Research Medical Director Viral Myocarditis Survivor and Heart Transplant recipient, former Head of the Heart Failure and Cardiomyopathies Division at the Charite, Germany Managing Director of a national insurance company Myocarditis Researcher and previous MF Fellowship Grant Recipient MICHAEL A LINN JOEL ARANSON President / CEO Director Medical Device Executive Founder and Chairman of National Sporting Good Corporation and Father of a Giant Cell Myocarditis Victim FRANCINE ANDREA Vice-President / COO GIUSTINA SCHIANO Former Vice-President for Enrollment Management, Student Affairs and Director, Family Ambassador Chief Compliance Officer for Felician University Mother of a Viral Myocarditis Victim LOUIS ROMANO, JR. STEPHANIE KENNAN Treasurer / CFO Secretary Owner of Homewell Cares Senior Vice-President of Federal Affairs at McGuire Woods Consulting Daughter of a Viral Myocarditis Victim CANDACE MOOSE Director and Founder GARY KUBERA Giant Cell Myocarditis Survivor and Heart Transplant recipient Director Gary Kubera a chemical industry executive and now an industry investment LESLIE COOPER, MD advisor, consultant and an executive coach. Chief Medical Director, Founder Chair of the Cardiovascular Department of Medicine at Mayo Clinic, JAMIE GIANI Jacksonville, Florida. Director Mother of a Viral Myocarditis Victim JACK PRICE, MD Pediatric Medical Director Professor of Pediatrics, Baylor College of Medicine, Pediatric Cardiologist Heart Failure and Transplant Cardiology, Texas Children’s Hospital Executive Director Operations & Public Relations Manager GENEVIEVE RUMORE, RN, BSN MELISSA GRAHAM Kingwood, Texas Kingwood, Texas Medical Advisory Board AKIRA MATSUMORI, MD WILSON TANG, MD President, International Society of Cardiomyopathies, Myocarditis and Heart Professor of Medicine at Cleveland Clinic Lerner College of Medicine; Failure; Visiting Director, Clinical Research Center, National Hospital Practicing heart failure and transplant cardiologist at the Cleveland Clinic, Organization, Kyoto Medical Center, Japan specializing in cardiomyopathies and myocarditis. BRUCE M. MCMANUS, CM, OBC, PHD, MD, FRSC, FCAHS, FACC, FCCS ENRICO AMMIRATI, MD Professor Emeritus, UBC Centre for Heart Lung Innovation Founding CEO, Assistant Professor at the School of Medicine at the Vita-Salute San Raffaele PROOF Centre of Excellence Vancouver, British Columbia, Canada University in Milano, Italy; Clinical cardiologist who subspecializes in heart failure and myocarditis at the DeGasparis Cardio Center and Transplant Center at DENNIS M. MCNAMARA, MD, MS the Niguarda Hospital in Milano, Italy. Professor of Medicine Director, Center for Heart Failure Research University of Pittsburgh Medical Center JUSTIN GODOWN, MD Medical Director of Pediatric Cardiomyopathy and Cardio-Oncology; Assistant DELISA FAIRWEATHER, PHD Professor & Practicing Pediatric Cardiologist at Monroe Carell Jr. Children’s Professor, Director of Translational Research, Department of Cardiovascular Hospital at Vanderbilt, Nashville, TN Medicine Mayo Clinic, Jacksonville, Florida Secretary to our Medical Advisory Board KATELYN BRUNO, PHD, FHFSA Assistant Professor of Cardiovascular Medicine Division of Cardiovascular Medicine, Dept. of Physiology & Aging, Center for Regenerative Medicine. University of Florida, Gainesville, FL Mailing Address: 800 Rockmead Drive, Suite 155. Kingwood, Texas 77339 Telephone: (281) 713-2962 Find us online: www.myocarditisfoundation.org twitter.com/ www.facebook.com/ Instagram.com/ Inspire.com/groups/ myocarditisfndn myocarditis.foundation/ Platinum MyocarditisFoundation myocarditis-foundation Transparency 2022 Inspire.com/groups/ pericarditis Candid.
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