Director's Messages

Rare and ultra-rare diseases affect millions of people worldwide. Today, roughly 10,000 known rare and ultra-rare diseases affect more than 30 million Americans and their families. The incidence of each disease may be rare, but collectively, rare diseases represent a unique public health challenge. Further, rare diseases disproportionately affect the nervous system, and almost 90% of rare disorders can occur in children. For years, the NIH and NINDS have supported important research efforts and partnerships that aim to better understand, diagnose, and treat rare diseases.

Neurodegenerative diseases progressively damage specific cells and connections in the brain and/or spinal cord, exacting an enormous toll on the health of people living with these diseases, as well as their families and caregivers. Amyotrophic lateral sclerosis (ALS) is a particularly devastating and complex neurodegenerative disease that affects the neurons that control voluntary muscle movement.

How is it acceptable that the fate of your brain depends on where you live? Most hospitals in the United States can provide acute stroke treatments that are life-saving and prevent life-long disability. However, the key to a successful outcome is to immediately recognize stroke symptoms and call 911 so that hospital treatments can be delivered within a few hours. Sadly, many people across the country do not receive these acute stroke treatments.

Neurodegenerative diseases result in progressive damage to specific cells and connections in the brain and spinal cord, and they exact an incalculable toll on patients, as well as their families and caregivers. Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease that gradually robs people of their ability to walk, talk, move, swallow, and even to breathe on their own.

September is Pain Awareness Month – an opportunity to reflect on our efforts to help the millions of Americans who suffer from chronic pain and to acknowledge that pain has cascading impacts on individuals, families, communities, and the nation. At the National Institute of Neurological Disorders and Stroke (NINDS), in collaboration with our partners across the National Institutes of Health (NIH), our programs support research at all levels - from basic science to therapy development to clinical research.

Funding the highest quality science is a critically important element in advancing the mission of NINDS. Our Office of Research Quality leads NINDS’s efforts through workshop and meeting presentations, publications, and dissemination of research design and transparent reporting guidance and comprehensive educational tools. In May of this year, we brought together a group of de facto “Rigor Champions” for a two-day workshop to discuss how best to promote the principles of scientific rigor and transparency at research institutions.

NINDS recognizes 2022 National Disability Independence Day

June is Pride Month, and this month has been an important time to reflect on the neurological health and well-being of lesbian, gay, bisexual, transgender, intersex people and all others who fall under the queer umbrella (LGBTQI+). Approximately 11 million individuals identify as LGBTQI+ living in the United States in 2020. Our society, like LGBTQI+ individuals, is multidimensional, encompassing all races, ethnicities, religions, and social classes.

From June 21-22, 2022, NIH will host the 8th Annual Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative Meeting: Open Science, New Tools with an exciting all-virtual format.

Some scientific problems exceed the capabilities of one or two laboratories, and therefore NINDS recognizes that interdisciplinary team science is essential to advancing our mission. By leveraging expertise and approaches across multiple disciplines, we can tackle the most ambitious goals and challenges in modern neuroscience research.