Thursday, February 17, 2022

MOMS & DOCS: A COALITION FOR CHANGE IN PEDIATRIC MYOCARDITIS DETECTION


2/11/2022- The Angiofoundation and Integrative Pain Healers Alliance (comprised of physicians, researchers and public educators) and the For Elysa Foundation, a non-profit advocacy group supporting pediatric myocarditis research- united in their first multi-org summit to test drive a coalition concept to unite all advocacy groups for "a common and louder voice for change!"  

The "spark" of the coalition originally came from two “Doctor Moms”- Dr. Noelle Cutter and Dr. Roberta Kline as part of a research assignment on genomic science and Long Haul (post Covid infection) disorders.  Published reports of myocarditis since the early 1900’s about a “sudden heart failure” showed new headlines during the pandemic, drawing a spotlight on the rare viral-driven cardiac disease. Their search led to the For Elysa Foundation, a foundation dedicated to Elysa Rojas (2) who passed away from Viral Myocarditis in January, 2013.

Aptly called "Project: Mommies on a Mission", the name and group design was inspired by For Elysa Foundation founder Mrs. Jana Rojas’ who describes her fellow advocates thusly.  Her foundation was built to promote "improved Education, providing Light and promoting Research to help physicians and families prevent another tragic death from sudden cardiac arrest and viral myocarditis."  IPHA immediately connected with Mrs. Rojas to brainstorm, then build what is now "PROJECT 1"- a two part initiative to offer a supportive arm to their fight against children's cardiac conditions and a united front to advance the role of the medical community.

The IPHA coalition concept and outreach offers vocal support to the many parent groups fundraising on research for their respective focus disorders.  Through info sharing, resource access and expanded networking, the blueprint is comprised of uniting the medical and patient communities to work on more effective protocols. Recognized IPHA research director and cancer diagnostic specialist Dr. Robert Bard (NYC), the clinical alliance staged their plan to bring advocacy to physicians in the form of research and education for improved detection and monitoring solutions from the global imaging society.  "Where parent communities fall short of getting the attention of medical leaders, we as MD's offer some new advantages like conferences, symposiums and our private networks... as parents ourselves, and we want to lend a hand in recruiting all docs to support "the better way" like smarter exam strategies and use of non-invasive imaging in sick visits as part of a major step toward saving more lives from this insidious disease"

"The tricky thing with myocarditis being virally mediated is that Elysa could have had a heart scan a week before she died (the day before she contracted the virus that wrecked her heart), and it would have been normal", stated Mrs. Rojas who emphasized her thoughts on the efficient use of diagnostic imaging is during a sick visit, where any other time prior may not prove conclusive as a screening paradigm.  

The success of the first meeting gave promise to a national outreach, bringing parents and physicians together - where community discussions are the ideal step in problem solving.  “After just this one exchange, we all agreed that major CHANGE needs to happen from the diagnostic area… we need to develop quantifiable and effective early detection methods .  Also, we need to communicate with all ED’s and ICU responders to recognize the urgency of cardiac imaging for patients viral infection- and make that part of a standard exam for pediatric myocardial inflammation”, stated Dr. Cutter.

In a recent interview with NYCRA NEWS, Dr. Bobbi Kline expanded on the initiatives of this project; "one recent hurdle to overcome within our outreach to the medical community appears to come from the current headlines about the rare possibility of myocarditis that may be linked to the vaccine. While just the mention of the vaccine seems to spark political division and conflict, this issue is much broader and our focus is in helping the children, not the politics." 

For inquiries or media contacts, please email: jointhemoms@gmail.com or call: 631.920.5757


EXTRA:
 See the video by Dr. Matt Elias (pediatric cardiologist of the Children's Hospital of Philadelphia) 'A Pediatric Cardiologist Talks Myocarditis & COVID-19 | Perspectives on COVID-19 Vaccine for Kids' .

A Word from Doctor Mom #1

Meet Dr. Bobbi Kline, one of Project: Mommies on a Mission's top advisors and creators. 

"As a mom, my heart grieves for parents, including Elysa’s, who suffer such devastating tragedy. It’s the worst thing you hope never happens to your child, and I truly admire parents who turn a tragedy into something positive. It requires such amazing strength, courage and grace. As a physician, I find my self immediately asking "Why do these things happen? How can we predict or prevent them?" As clinicians, we look for patterns to help guide diagnosis and treatment. We know what to expect, but sometimes they can lull us into a false sense of security. Childhood viruses, as any parent knows, are an expected part of those early years." 

See Dr. Kline's complete review; TROUBLESHOOTING MYOCARDITIS @ Health Resource Digest



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