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Spread the Word, Save A Life

Click Here to Save a Life

The button above will take you to the NIDCD website where you can provide a brief comment on how a swallowing disorder affects you, someone close to you, or the people you support in your clinic and/or research. Deadline to respond is 9/30/16.

Please use the words “swallowing disorder” or “dysphagia” in your comment.

NIDCD Request for Comment Background (Summary) 

The National Institute on Deafness and Other Communication Disorders (NIDCD), a branch of the National Institutes of Health (NIH), recently released their draft of the NIDCD Strategic Plan for years 2017-2021. The goals in the draft are based on an assessment of research areas that present the greatest scientific opportunities and that address the greatest public health needs over the next five years for hearing and balance; taste and smell; and voice, speech and language. A recent NIH Reporter search of current fiscal year funding of grants that listed both swallowing and dysphagia in their descriptions identified 77 grants, 22 of which were supported by the NIDCD; that is 28.6%. Because many other NIH Institutes and Centers look to the NIDCD as being the primary source for dysphagia funding, if the NIDCD chooses to exclude dysphagia from its program priorities and explicitly from its 2017 – 2021 strategic plan, support for dysphagia research may see a substantial decrease. This would likely create a larger gap in funding for a condition that is already under-funded.

 The NIDCD Director, Dr. Battey distributed an open letter on September 1, 2016, requesting comments on their 2017 – 2021 Strategic Plan. They have requested input from the public; the more they know about how a swallowing disorder affects everyone, from pediatrics to geriatrics and all those in between as well as the professionals who support us, the better they will be in shaping their plan to provide support for research commensurate with the impact of this debilitating disorder. Please be considerate in your comments; NIDCD currently supports research on swallowing disorders. Our goal is to help them better understand the deep impact of this disorder.

Examples include…

“My swallowing disorder has led to severe health problems including aspiration pneumonia, I have not shared a meal with my family in over 8 years”

“Patients I treat with swallowing disorders have typically been previously misdiagnosed; the isolation resulting from this disorder in almost unimaginable”

“People I treat with dysphagia have lost hope and are depressed, our current treatment options are not enough.”

“My father suffers from dysphagia and his doctors say there is nothing that can be done”

The button below will take you to the NIDCD website where you can provide a brief comment on how a swallowing disorder affects you, someone close to you, or the people you support in your clinic and/or research. Deadline to respond is 9/30/16.

Click Here to Save a Life

NIDCD Request for Comment Background (The details) 

What else are we doing to relay the importance of funding for dysphagia research to the NIDCD?

Dr. Battey’s Request for Feedback NFOSD Letter to the NIDCD NIDCD Strategic Plan 2017-2021

Join the NFOSD…Make a Difference

Thank you for taking the time to provide your personal statement to the NIDCD.

~The NFOSD Team~ 

Our Foundation has written directly to the leadership of the NIDCD requesting their consideration of including swallowing disorders as an integral part of their strategic plan as well as a request for better coordination of swallowing disorders across the NIH. You can download a PDF of that letter by clicking on the middle icon above or read it below.




2 Comments On “Spread the Word, Save A Life

  1. Ed Steger Reply

    I posted the following as an individual on the NIDCD request for comment page on 9/24/216… I’m a five-time head and neck cancer survivor. My last real meal was in July 2006, the day before my 12-hour salvage surgery. I have a swallowing disorder (dysphagia). I contracted aspiration pneumonia in 2012 that almost took my life and put me in Inova hospital. It took almost two months to recover. I’ve become isolated, depressed, have lost friends, and placed a burden on my family that I would not wish on my enemy. The rehabilitation options for me are limited. This disorder marginalizes me and the development of a coordinated approach within NIH to address this would go a long way toward bringing focus to a disorder which is under recognized, often times poorly treated, leads to increased healthcare costs, and there is little current hope for true rehabilitation. Imagine a world without air or water. Because food is so central to our survival, not just for nutrition but for our social nurturing, living without the ability to share a meal with others is not that different than a world without air or water, it is devastating. — Ed Steger

  2. Ally sandoval Reply

    I have worked in research for 2 years and think it is essential that we continue to research dysphagia as this disorder majorly effects the quality of life individuals have along with their families.

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