What Can NIH Do? What Can’t NIH Do? How Can We Work Together?

My recent column about post-acute COVID syndrome generated a lot of feedback, and one of the most common questions I got asked is, “Why don’t you tell Congress they need to allocate funding for [Disease X]?  It is so common, so disabling, so deadly, and so costly for patients, families, and society.  You need to tell them to allocate a fraction of their budget to conquer [Disease X].” 

This common question has a very, very simple answer: It is against Federal law for NIH or any Federal employee to lobby Congress.  We simply cannot advocate for ourselves, our scientific community, or specific patient and family constituencies.  We are permitted to educate members of Congress, but even that, only when asked to do so. 

Another question I am often asked is, “Why doesn’t NINDS just declare that, this year, we are going to spend our money on understanding, treating, and curing [Diseases A, B, and C] because they are so prevalent and so negatively impact  the lives of patients and families.”  Each NIH institute has a different way of making its funding decisions.  While Congress has allocated funds to some disease- or condition-specific programs that NINDS leads or co-leads, NINDS generally has not. 

This decision grows directly from our long-term vision and strategy.  Our vision sets its sights on easing the burden of patients with neurological disorders – not a specific type of patient or a specific neurological disorder, but all people affected by any and all neurological disorders. 

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Working together to understand long-term effects of COVID-19

The National Institute of Neurological Disorders and Stroke (NINDS) kind of lives between two worlds. We serve the scientific community by providing the resources it needs to conduct research that eases the burden of those living with or at risk for neurological disorders. In this regard, we provide funding, expert guidance, training opportunities, shared resources, partnership with professional organizations and biomedical corporations, and access to shared data and information on best practices.

We also serve the public, particularly those affected by neurological disorders. For example, we provide information, networking workshops, opportunities to participate in research that changes the equations and outcomes for patients and families, and partnership with advocacy organizations and schools. You could say that NINDS is a convener and connector, constantly looking for mechanisms through which scientific research and the lay public can synergize with one another.

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May is Stroke Awareness Month

COVID-19 is on everyone’s mind these days and rightfully so. Everyone’s life has been turned upside down, with frequent handwashing, masks, working from home, and the closing of non-essential businesses. Doctors and scientists have learned so many new things from studying the novel coronavirus and the patients infected with it. You may be puzzled by how many of the body’s functions and organs appear to be affected by COVID-19, and, at first, doctors and scientists were too. But now they know that the normal body protein that allows the novel coronavirus to enter cells, ACE-2, is present on cells that are…well, just about everywhere in our bodies.

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