When the most vulnerable children rely on your researchers to find the answers that will lead them to a longer life, the pressure is always on. There is a palpable sense of urgency that beats with each new heartbeat knowing that today a heart transplant is not a cure, but a bridge to life, lasting on average 17 years. To combat this harsh reality, Enduring Hearts actively funds the brightest scientists from around the world who actively seek to find the cause and treatment of organ rejection, the primary driver of transplant failure.
Amidst the COVID-19 crisis as the backdrop, we celebrate National Pediatric Transplant Week to bring awareness to the need not only for organ donation but for the need to invest in research to make a transplant a lasting functional cure. Sadly, .001% of all clinically funded research is dedicated toward pediatric heart transplantation and more alarming 50% of donated pediatric hearts are discarded for poor quality while hundreds of children die on a waiting list. We must do better for these children and their families.
2020 was shaping up to be an explosive research year at Enduring Hearts, researchers’ grant proposals were filling our portals, and laboratories were finely tuned and poised for great discoveries. Internally, we were putting the finishing touches on our fundraising calendar to ensure that we had a pipeline of donations that would fund the most promising science that would help to save children’s lives. But like Caesar, the Ides of March proved devastating and our worlds quickly began to crumble.
COVID-19 has a far-reaching impact on heart transplantation; impacting heart transplant children as well as those dedicated to making a transplant last a lifetime. The daily regime of immunosuppressant drugs required to stop organ rejection leaves children open to increased infections and viruses, especially COVID-19. The logistical and mental strain of caring for a medically fragile child results in many single low- income families. Our internal analysis reveals that 50% of our gas card families earn $29,000 or less per year! Families are stressed and stretched very thin. They are often scared to go into doctor’s offices for fear of infection and added risk. They are in dire need of additional support and financial assistance. Enduring Hearts added the Road to Recovery Feed the Heart Program this spring in response to our family’s needs to help provide direct grocery support during this crisis. This unplanned program received over 100 applications within the first two weeks, quickly demonstrating the underlying needs of families. To learn more about this program.
Research institutions are impacted by COVID-19, temporarily closing the doors to most laboratories to protect the spread of infection. Enduring Hearts is working with all our investigators to help them navigate through this uncertain time as their labs are not fully operational, and many doctors are not able to enroll clinical patients during this time.
We have received multiple requests for schedule delays that spread into the following year. Many of our doctors are also on the frontlines seeing patients each day, exposing themselves to risks of COVID-19. They are truly heroes! While we are in a race against time for our heart transplant children, we understand that delays at this juncture are necessary. We still must hold steadfast in our mission to make the transplant the cure.
As an organization, we must be resilient as our heart children. We have responded to these changing circumstances in several ways. We have expanded our scientific efforts by looking for opportunities to build a much-needed infrastructure to support a data common and sharing platform to accelerate science. We believe this focus on technology will not only lead to the open sharing of discoveries but also improved patient outcomes. This tech focus buys us time as we wait for the labs to open, and the brightest minds to begin again their diligent search for answers.
We anxiously wait with the rest of the country to bring life back to a new normal.
Our mission focus calls attention to the tenuous, precious gift of life. We live with this persistent thought in the back of our minds.
COVID-19 has not changed this, but made us more focused than ever to not only ENDURE, but to be RESILIENT.