In the United States, rare and ultra-rare diseases are defined as conditions that affect fewer than 200,000 or 6,000 people, respectively. While these numbers may seem small, they add up to a large burden: collectively, nearly 30 million Americans are living with one of the roughly 7,000 known rare or ultra-rare diseases.
At NINDS, we anchor our efforts and activities on our mission statement: seeking fundamental knowledge about the brain and nervous system, and using that knowledge to reduce the burden of neurological disease for all people. I have been reflecting on that last clause often lately: for all people.
Neurodegenerative diseases result from progressive damage to cells and connections in the brain, spinal cord and nerves, impairing a person’s ability to move, think, communicate, or feel, and often ultimately lead to death.
Around 1440, Gutenberg invented the printing press and since then science has been communicated in “papers”. However, current and future technologies for data storage and sharing offer new opportunities to enhance the value of meticulously collected data.
This Pain Awareness Month, I am reflecting on how the experience of pain reaches beyond its physical sensation. The pain circuits in our bodies are built to protect us from harm – for example, moving away from a hot flame, or building long-lasting memories/reflexive actions that prevent injurious behaviors.
NINDS is committed to funding research that, by improving our understanding of how the brain and nervous system works, reduces the burden of neurological disorders and injuries.
Clinician-scientists, who understand diseases and disorders intimately due to their clinical training and practice, are critical to accomplishing the NINDS mission.
From June 15-17, NIH will host the seventh annual Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative Investigators Meeting, with an exciting all-virtual format.
In addition to creativity, hard work and persistence, scientific discovery relies on researchers’ support to pursue critically important but difficult questions. This frequently requires long-term approaches and the ability to redirect experimental approaches as the evolving science dictates.