The Matter of a Child’s Heart
The last year has been parent’s nightmare for Ryan and Tania Barbera. Learning their only son Jack, has a progressive muscular disease that could take away his ability to do the things that so many other children do – running, playing, and living worry-free. Jack can do all those things now, but time is ticking with Becker’s muscular dystrophy (BMD), an inherited condition that causes progressive weakness and wasting of the skeletal and cardiac (heart) muscles. It primarily affects young boys, and in many cases, heart involvement (cardiomyopathy) is the first sign. Most children experience symptoms between the age of 8 and 11 years of age. BMD is caused by a genetic change in the Duchenne’s Muscular Dystrophy (DMD) gene and is inherited in an X-linked recessive manner. BMD is very similar to DMD. Unfortunately, they are both lethal.
“Jack knows that he has this disease. What Jack doesn’t yet know is that it may one day take away his ability to walk. One day, my wife and I may have to have that conversation. Just thinking about it is gut-wrenching. Strongest Hearts was founded to stop any parent from ever having that conversation,” said Ryan Barbera, Co-Founder, Strongest Hearts Foundation.
Ryan and Tania Barbera are providing their own substantial donations of time and resources to advance public understanding of BMD and DMD and to help fund the start of major research using Nobel prize winning CRISPR technology which has revolutionized the field of gene-editing and offers a transformative approach for the treatment of genetic diseases like the one Jack has. They are hoping to raise the remaining $165,000 they need by May 1, 2023.
Research is being overseen by Dr. Vinod Jaskula-Ranga. Dr. Jaskula-Ranga is the Chief Executive Officer of Hunterian Medicine, a pre-clinical biotechnology company focused on CRISPR gene-editing technologies. He is the lead inventor on over 12 issued or allowed U.S. and international patents for his groundbreaking CRISPR and AAV therapeutic-delivery technology, and well over 50 U.S. and international patents pending. Dr. Jaskula-Ranga’s research has been highlighted by Chemical & Engineering News, Genetic Engineering & Biotechnology News, Biotechniques, Xconomy, and GenomeWeb, among others. Prior to founding Hunterian Medicine, he completed a fellowship in Genetic Engineering and Molecular Ophthalmology at the Wilmer Eye Institute of the Johns Hopkins University School of Medicine, where he received his Ph.D. in Molecular Biology and Genetics and trained in the laboratory of Nobel Laureate Dr. Carol Greider. Dr. Jaskula-Ranga also holds a B.A. in Religion from Case Western Reserve University, where he was awarded the Ratner Family Prize in recognition of the “Highest Academic Achievement.”
About Strongest Hearts Foundation
Strongest Hearts Foundation is currently being fiscally sponsored while it works to acquire its own 501-c-3 status. The fiscal sponsor is the very reputable Players Philanthropy Fund (PPF), founded by 2x Super Bowl Champion and Ravens “Ring of Honor” inductee Matt Stover and philanthropy expert Seth McDonnell. The nonprofit organization is raising funds for research to find a cure for muscular dystrophy as it work provides education to families and the medical community, improving early identification and aid with those suffering from the rarest and most serious forms of Muscular Dystrophy (MD). Today there is no cure for MD, so the vision of Strongest Hearts is to take strides so that it can be identified at birth or in utero and treated with a single treatment that permanently stops the disease.
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