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/
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