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Share Your Story

Swallowing disorders are estimated to impact 510 million people worldwide. We invite you to share your swallowing disorder story because there are many who are unaware of the significant impact dysphagia has on an individual and their loved ones.

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Survey Opportunity: Dry Mouth

Are you impacted by dry mouth? If so, Oral Fluid Dynamics, LLC. is requesting your feedback through a short, online survey.

This company is in the process of creating a revolutionary dental implant that functions as an artificial salivary gland, providing continuous relief. The device taps the self-replenishing fluid from within the jaw bone.  It filters the fluid to remove cellular material and transfers it into the mouth as substitute saliva.

Want to learn more about the device? Visit: https://www.oralfluiddynamics.com/



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NEW WEBINAR! Celebrating the Holidays with Dysphagia

Thursday, December 2 at 8am Pacific (11am Eastern)



IDDSI and the National Foundation of Swallowing Disorders present a special webinar focusing on patients with dysphagia and what they may face during the holiday season.


NFOSD Board Member and nutritionist, Laura Michael, will bring her industry and caregiver experience in diet modification, and share tips on how to safely and joyfully celebrate the holidays when you have swallowing problems, offer tools to enjoy food and social gatherings, and how to navigate the social and emotional aspects of the holidays, while incorporating the IDDSI standards into holiday celebrations.


As a bonus, Chef Diane Wolff of Essential Puree has generously offered to share a free, downloadable copy of her “Purees of Fall: The Holiday Meal” PDF with our community that includes some excellent holiday recipes that may be safe (and delicious!) for those who modify their food consistency to a puree.

Additionally, if you would like Diane Wolff’s two books in the Purees of Fall series, Game Day and Snacks and Shakes, please email her at diane@essentialpuree.com and she will email you the links to download copies.



Questions about the webinar? This webinar is hosted by IDDSI. Please reach out to office@iddsi.org for more information.



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NFOSD Michael Donovan Advocacy Award

Michael Donovan
Founding NFOSD Board Member
In Memoriam April 2018

Award Description:

This award is open to any individual impacted by or serving those with a swallowing disorder, including but not limited to: healthcare providers, persons with dysphagia, and their families. It is specifically targeted to swallowing disorder advocacy, activism, and volunteerism within a clinical or community setting.

Michael Donovan was an original founder of the National Foundation of Swallowing Disorders and served as a board member from 2006 to 2018. He survived head and neck cancer for 23 years before passing away in April 2018. His love for and commitment to the Foundation brought family and friends together to provide hope and support to people worldwide living with a swallowing disorder. Michael’s optimism will always live on within the Foundation and this award is one way of honoring him for his never-ending engagement, volunteerism and advocacy for the swallowing disorder community. 


Requirements

  • Applicant must submit the following through the Dysphagia Research Society webpage:
    • Application form
    • 1-page essay describing their swallowing disorder advocacy/volunteerism efforts and how these impact the community
    • Optional: Letter of support from another individual familiar with their efforts
      • Can be a family member, community member, colleague, etc.
  • Application can be submitted on behalf of another individual.
  • Applicant does *not* need to be a member of the DRS or NFOSD to apply for the award.
  • Applicant does *not* need to be present at the DRS Annual Meeting to receive the award.
  • Applicant does *not* need to be located in the United States.

Exclusionary Criteria

  • Currently serving on the Board of the National Foundation of Swallowing Disorder or the Dysphagia Research Society
  • Applicant has received the Michael Donovan Advocacy Award within the last 3 years

Monetary Value

$1,000 funded by the NFOSD + complimentary registration for the 2022 DRS Conference.


Application submission for 2022 Award by Friday, January 7, 2022.


Please email DRS@badgerbay.co (not .com) if you have any questions.




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Xerostomia EL-PFDD Recording

On August 19, in collaboration with 3 head and neck cancer nonprofits, the NFOSD hosted a meeting that gave patients and families impacted by chronic dry mouth a way to share the impact of living with xerostomia. The meeting gave FDA and other key stakeholders, including medical product developers, health care providers, and federal partners, an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact it has on patients’ daily lives, and patients’ experiences with currently available treatments. This input informs FDA’s decisions and oversight during drug development in addition to their review of a drug’s marketing application.



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Unidentified Causes of Dysphagia

WHAT ARE NEXT STEPS WHEN THE CAUSE OF DYSPHAGIA HASN’T BEEN IDENTIFIED?

Dysphagia can be exhibited in many ways: coughing, choking, feeling like food is sticking, difficulty or pain with swallowing, bringing food back up, and others.  Sometimes the dysphagia is accompanied by, or can cause, changes in overall health, like weight loss or changes in lung health.    Sometimes the cause of these dysphagia symptoms is obvious, such as when a person has a neurological disease (e.g. Parkinson’s, dementia), has experienced a traumatic episode (e.g. stroke, head injury), or has head and neck cancer.

However, sometimes the symptoms of dysphagia cannot easily be tied to an obvious cause, and therefore no treatment plan can be developed. When that happens, it can be very frustrating and you may feel abandoned by the medical team. What steps can you take if you find yourself in that situation?

  1. Do some research on your own on the web to see if there is any information about swallowing symptoms similar to yours.  Be sure you are reviewing information on reputable sites, such as the Mayo Clinic, medicinenet.com, WebMD, etc.  
    • Take good notes on what you read and list the site(s) where you found the information.
  2. Make note of anything you do, or any circumstances, that make the problem better or worse.
    • Better or worse at certain times of the day or night?
    • Relieved or made worse when eating or drinking certain foods?
    • Better or worse when sitting, standing or lying down?
  3. Meet with a member of your medical team, share all of this information,  and pose a series of questions:
    • Review all of your medications (prescription and over-the-counter) with the medical professional and ask if any of those medications might be contributing to your symptoms.
    • Be sure the medical professional is aware of any other medical problems you are having, or have had in the past. Some of these problems might not seem obviously related to your current symptoms, but relationships like that aren’t always clear. For example:
      • ‘Indigestion’ might not seem related to a feeling of a lump in the throat, but the indigestion might be reflux and that feeling of a lump in the throat is likely related.
      • Feeling strain when talking or having a persistent cough might not seem related to pain with swallowing, but it could be.
    • Are there any other diagnostic tests that are indicated to gain more insight into the problem?
    • What are those tests and what further information might be gained?
    • Has the medical professional ever seen another person who presents with symptoms similar to yours?
    • Is there another medical professional you should consult?
    • If you are very anxious about your problem, discuss how anxiety can make certain symptoms worse.
  4. Seek out an assessment at a multi-disciplinary swallowing center. This might be called a Swallowing Center, Swallowing Clinic, Voice and Swallowing Center or Dysphagia Center. Because dysphagia symptoms may seem like they are occurring in one part of the body, but actually originate in another, a multi-disciplinary team that can be found at these centers is often indicated to take a holistic look at the presenting problem.  These specialized centers are usually affiliated with large university systems and would ideally include professionals from specialties such as:
    • Neurology
    • Gastroenterology
    • Otorhinolaryngology
    • Speech-Language Pathology (one with Board Certification in Swallowing). You can check the website of the American Board of Swallowing and Swallowing Disorders to find such a professional: https://www.swallowingdisorders.org/

If you need any assistance finding a specialist, you can reach out to the NFOSD at info@nfosd.com. Our medical advisory board can help provide referral information for the most appropriate specialist.