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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. continue reading →



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Breaking News: FDA Approves Phase I for Human Tongue Stem Cell Initiative to Treat Dysphagia

Great news received during National Dysphagia Awareness Month: UC Davis in Sacramento, CA released their 2016 Annual Newsletter this week which included the announcement of much anticipated, fantastic news regarding FDA approval to launch their human tongue stem cell clinical trial to determine the safety of the treatment in 20 people.  Click Here to read the UC Davis newsletter.

Dr. Peter Belafsky and his research team at UC Davis started this project over five years ago. The NFOSD, whose mission is in part to support research initiatives, became involved in the fundraising efforts which raised over $40,000 in under 3 months. The NFOSD is grateful to the the fundraisers and the donors who dedicated their time and money to make this research idea a reality. To learn more about this initiative at its beginning, read an interview conducted with Dr. Belafsky’s team: Click Here.

By summer of 2013, the research team moved the investigation to the lab hypothesizing that by increasing muscle mass in a human tongue via adult human stem cell infusion, the tongue would become stronger and improve the swallowing function. To review the steps that were completed during this portion of the initiative: Click Here. The upcoming study period for this Phase 1 open label clinical trial will span the next 2 years. The NFOSD will share more results as they are available.

Advancing the treatment of swallowing disorders in our lifetime is the mission of the NFOSD. We do this by providing patient support, promoting education, raising awareness, and as mentioned above, supporting research. We need for your help to raise additional funding needed to carry out this research initiative and other investigations aimed at treating dysphagia. If you are willing and able to donate, we ask that you visit our donation site: https://donatenow.networkforgood.org/NFOSD2016.

Congratulations to the UC Davis Team!


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WEBINAR! Pediatric Feeding and Swallowing: A Caregiver Forum

The National Foundation of Swallowing Disorders, with support from Cook Medical, is proud to present the second series of patient-centered webinars on the latest research and information on swallowing disorders. Experts in the field of swallowing disorders will present information on topics such as esophageal dilation, lymphedema, tracheotomies, and more! If you are a Speech Language Pathologist (SLP) or know someone with a swallowing disorder, please share this web page with them.

continue reading →



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In Memory of Steven Leder, Ph.D., CCC-SLP, Professor, Otolaryngology, Yale

Steve LederI first met Steve in March 2013 in Seattle at the annual Dysphagia Research Society (DRS) meeting. I had recently been elected President of the National Foundation of Swallowing Disorders. Over the next few years we emailed back and forth a few times. What jumped out at me was his energy, passion, enthusiasm, advocacy, and champion of all things dysphagia. I admit, I was a bit in awe of him… past President of DRS, Yale, respected clinician and researcher, and the commander of his own life. We didn’t spend much time together, but speaking for myself and others in the foundation, he will be missed.

— Ed Steger continue reading →



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Snap & Send Campaign to Raise Awareness

June is National Dysphagia Awareness Month. This year, the NFOSD hopes to educate thousands of people around the world about the significant impact of dysphagia. To do this, we need your help!

We are looking for the faces of dysphagia. If you or a loved one are impacted by a swallowing disorder, send us a picture of yourself, the food you eat, or something that reminds you of your swallowing disorder (e.g., a restaurant you used to frequent).

It’s easy; snap and send. Email your picture to info@nfosd.com by May 23rd, 2016.

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