Research as Advocacy

By: Nina F. Schor, MD, PhD, Pediatrician-in-Chief, Golisano Children’s Hospital

HuthPhoto_KAH_5315ResearchWhen we use the word “advocacy”, we usually think of politics and social justice. We think of marching on the Mall in Washington, DC. We think of visiting our representatives in Congress. We think of writing a letter to the newspaper or signing a petition or being a public defender or a social worker. We do not think of a biochemist in a lab coat or a nurse-coordinator enrolling patients in a clinical trial.

What is advocacy? It is standing up in public for people who cannot stand up for themselves. It is bringing attention and solutions to people and causes about which others have forgotten.

When we do research, it is because we are looking for answers to questions that others may not even think to ask. Often, and especially at children’s hospitals, others do not think to ask those questions because the people who would potentially benefit from the answers are invisible to them. How many lay people realize that children get cancer and stroke and arthritis and diabetes and kidney failure? How many lay people realize that adult disease starts as high blood pressure or obesity or mental illness or poor nutrition in childhood? And what ordinary venture capitalist would invest in something knowing that the pay-off will come in the years beyond his or her lifetime? Those who choose to work to solve the problems of the under-recognized and underserved and those who fund their endeavors are visionaries investing in a legacy. They believe that the chance that the future will be brighter than the present is return on investment enough.

So what kind of research do we do here at Golisano Children’s Hospital?  Here are just a few examples to whet your appetite for advocacy:

  • Our Center for Perinatal and Pediatric Origins of Disease, directed by Michael O’Reilly, Ph.D., examines those early life conditions that lead to chronic susceptibility to disease later on, in efforts to prevent adult diseases through better health management in childhood.
  • Our Center for Pediatric Biomedical Research, directed by James Palis, M.D., Ph.D., studies the molecular and cellular events that turn single cells into organs and organ systems, each seeks to understand and prevent the factors that make this process go awry in an effort to prevent birth and genetic defects.
  • Our Preventive Care Program for Urban Children with Asthma, directed by Jill Halterman, M.D., M.P.H., partners with the Rochester city schools, primary care practices, the Neonatal Intensive Care Unit at the University of Rochester, and the Rochester community, to develop sustainable models for identifying children with and preventing episodes in them of this, all too common, disease.
  • Our research program in Autism and Developmental Disabilities, directed by Tristram Smith, Ph.D., conducts studies on the effectiveness of interventions, including early intensive behavioral intervention, for children with autism spectrum disorders.
  • Other laboratories and programs at Golisano Children’s Hospital provide hope for children and families with leukemia, hypertension, kidney disease, neuroblastoma, Batten’s disease, prematurity, congenital heart disease, attention deficit disorder, and viral and fungal infections.
The laboratory of Jim Palis and colleagues Paul Kingsley and Kathleen McGrath consists of an interactive group of various individuals who bring different perspectives to the table.

The laboratory of Jim Palis and colleagues Paul Kingsley and Kathleen McGrath consists of an interactive group of various individuals who bring different perspectives to the table.

How do we pay for research? It takes trained personnel, supplies, specialized equipment, laboratory, clinic, and/or office space, and funds to travel to national meetings and to prepare journal manuscripts to present results to other scientists. When someone just starts out in research, we usually fund all of those things for somewhere between three and five years out of money donated by the public, either for direct use or as endowment, with the interest being used to fund the research. Usually, once the researcher generates interesting results and presents them favorably to a national audience, he or she writes grant applications to the Federal government (the National Institute of Health is the largest and most frequent of our funders), private disease-related foundations, and/or companies that want researchers who are not their own employees to test their products.

In a good year, many of these funders fund 75 or 80 percent of the cost of the projects of 20 or 25 percent of the applicants. Right now, because of national budget woes, only six or eight percent of the applications are funded and sequestration is likely to mean a five percent cut in the fraction of the cost of each project that is paid for by the funder. We suspect it will be a long time before this picture improves significantly.

We could shut down much of our research and wait for the situation to improve. But think of how many children and families would forfeit the possibility that, in their lifetimes, their chance for a healthy life would increase. And think of what it means to regional employment, invention and discovery of drugs and devices that ultimately make it into the marketplace, and continuity of purpose and vision for a scientist and his or her team. Every business has its ups and downs, but this is the longest down period for biomedical research that those of us working today have ever seen. And, even in the good times, the only thing that keeps us going, striving, advocating for the improvement of child health is funding that is reliable through the “downs”. Endowment – funding that is invested and provides some measure of income every year – is the only answer.

Do you have the capacity to fuel a vision? Would you like to be part of the solution to the forces that threaten to halt advancement in child health and prevention of disease throughout the lifespan? Are you excited by the prospect of making discovery happen and contributing to the nurturance of the next generation of inventors, discoverers, and visionaries? Then read about our endowed chairs and funds to support research. Give and join the advocates for children and families who make the future happen!

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