May is ALS Awareness Month

May is a month of renewal. The landscape turns green again. Flowers add splashes of color to nature’s palate. Critters in hibernation much of the preceding months are seen venturing out and enjoying the newfound warmth.

May is also ALS Awareness Month. ALS stands for amyotrophic lateral sclerosis and denotes a relentlessly progressive group of disorders that, sometimes quite rapidly and sometimes more slowly but always unfairly destroys the motor system in the spinal cord and brain that enables the muscles to move. ALS robs healthy people of their ability to walk, lift a cup, speak so they can be heard and understood, and, eventually, eat and breathe.

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The NINDS 2021-2026 Strategic Plan: Overarching Principles

The NINDS 2021-2026 Strategic Plan evolved as a collaborative effort involving NINDS staff and stakeholders from the scientific, medical, and patient advocacy, family, and caregiver communities.  Its overarching principles are designed to serve the vision and mission of NINDS, long focused on leveraging its pre-eminence in discovery of the basic science underpinning function and dysfunction of the nervous system to ease the burden of patients and families dealing with neurological disorders.  These principles, discussed in depth in a new article published in Cell, are as follows:

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Announcing the New NINDS Five-year Strategic Plan

Two years in the making, we have posted our NINDS 2021-2026 Strategic Plan. This Strategic Plan differs from its predecessors in several ways. First, it began with a mandate that my colleagues at NINDS dream big. Big for patients and families struggling everyday with neurological disorders. Big for scientists around the world trying to understand the mysteries of the brain, spinal cord, muscles, and peripheral nerves. Big for the clinical trialists, the pharmaceutical industry, the science and technology policy makers, the device inventors. Big for health, quality of life, safety, rigor, and public access.

Second, it started within NINDS, with 100 taskforce and steering committee members and nearly 100 intramural faculty, staff, and trainees; then our outside stakeholders, with 140 discussion panel members; and finally more than 120 responses from individuals and organizations to requests for information from the public. Developing the plan empowered our biomedical workforce, engaged patients and advocacy groups, reached out to industry, academia, and our colleagues in government.

Third, it includes both focused approaches to our science and our training programs, and broad, overarching strategies that are part of the fabric of who we are and who we hope to be. That hope is to be the very best possible version of NINDS  and to serve as a model and impetus for the entire biomedical community to become their best, too.

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Help Contribute to the NINDS Strategic Plan!

Almost two years ago, I assumed the task of leading a new strategic planning effort to help the institute determine what directions to take over the next 5 years.  A daunting task to be sure.  But, after much dedication and deep thought, we have developed a draft strategic plan and are now seeking to gather your thoughts on the plan and how we should go about implementing it.

Our draft Strategic Plan is posted for public comment, and I encourage you to submit comments on it , including high priority issues we should focus on first.  Please submit your comments online via the webform at https://www.ninds.nih.gov/NOT-NS-21-021.  We set an original submission deadline of March 15th (Thanks to all of you who have already sent in your comments!) and have already begun considering submitted suggestions for incorporation into the final document.  But we will keep the submission interface open and will monitor it indefinitely.  Our Strategic Plan is, after all, a living, evolving document!

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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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