When I first came to The Children’s Inn in June of 2016, I had no idea what it would mean to me. The next several months, though, certainly ended up being some of the most transformational months of my life. I first came to The Inn as a 19-year-old who had somehow managed to finish his first year of college, even while dealing with a harsh genetic disease known as sickle cell anemia. After staying at The Inn for nearly five months, I left as a man, entering his second year of college, having been healed from the disease that once shaped his life.
“I kind of made it a mission of mine to find out as much as I can, what’s available out there as treatments, trials,” John says, “and just my way of giving back, whether it helps me directly or somebody who comes after me.”
Data sharing (e.g., via publication, collaboration, and repositories) ensures that data are used and published more broadly than they otherwise would be, promoting more rapid translation into biomedical and scientific advances, thus allowing American taxpayers who fund our research the opportunity to benefit more fully from our work.
You never know when inspiration will strike. I still remember the day that Dr. Francis Collins came to visit my high school genetics class. At that time, Dr. Collins was the director of the Human Genome Project, an international research program aimed at uncovering the genetic building blocks essential for human life. Imagine our recent excitement when Dr. Collins, now Director of the NIH, specially attended a reception for clinical fellows at the Clinical Center.
What is a rare disease? And how rare is “rare”? When I began my research at the NIH, I had a textbook understanding of rare diseases, but now, after four years as a postdoc in the IRP, I understand a bit more of what it means to the patients and researchers who try to help them.
“Then we have ‘prevention is more important than cure.’ That’s the one I like best. That’s my pet peeve…."
Dr. Emil Freireich, NCI, in his 1997 oral history. Dr. Freireich helped develop combined chemotherapy for childhood leukemia.
If you've been asking yourself what good your taxpayer dollars have been doing, let me tell you a story. I work at one of the most amazing places in the world. Every day I come in to work energized to see patients, to strategize how to bring new findings into the clinic and talk to brilliant scientists and physicians.
No need to stand in the cold for a glimpse of the Macy’s Thanksgiving Day parade when you can see it at the NIH Clinical Center! Want to go to space and have a look at the Apollo capsule? It’s here, too. Starting in 2004, the NIH Clinical Center has presented a wonderful annual display of gingerbread houses built by teams of NIH staff.