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Volunteers Needed!

Volunteer for the NFOSD

Thanksgiving Dysphagia Awareness Project


Here’s What you need to know:

 

1.    Project Background, Description, & Goal

Holidays can be a difficult time of year for those impacted by dysphagia, not only for patients, but also their caregivers and loved ones. Most holidays center around food and drink – none more so than Thanksgiving. The goal of the NFOSD Thanksgiving Awareness Project is to raise awareness impact of dysphagia and to provide support to those who may not be present at this year’s holiday table due to their difficulty or inability to eat and drink.

 

2.    Get Involved

The NFOSD is looking for patients, caregivers, and family members impacted by swallowing disorders to record a short video (3-5 minutes) addressing the following questions. Children may participate with parent/guardian consent and assitsance, but must be 5 years or older.

Video Outline:

  • Introduce yourself: Name, background
  • How are you impacted by dysphagia (cause, how long have you had dysphagia, prognosis, etc.)?
  • What makes Thanksgiving (or holidays in general) a difficult time?
  • What is something you wish your family, friends, or the public understood about swallowing disorders?
  • What gives you hope?

 

Tips:

  • Make sure you have good lighting
  • Limit environmental noise (recording inside is generally better for audio)
  • Speak slowly – don’t rush!
  • Use a tripod/keep the camera steady.
  • Cellphones will work just as well as high-tech recorders.
  • Please note that this video may be shared widely on the internet. You must have consent all persons filmed to share with the NFOSD. Parents/guardians must consent to share a video if the person filmed is under 18. 

 

Optional:

  • Submit a few photos of yourself, your family, your meals
    • We’ll try to work these into the video

 

Once you have recorded your video (and optionally, any photos), send it to Elizabeth at Elizabeth@nfosd.com. She will edit your video, add any photos, and provide captioning. She will then send you the edited copy of the video for you to review.

 

3.    DEADLINES
  • October 22: Submit your video (and optionally, any photos)
  • November 5: Edited videos will be sent back for approval with date video will be shared
  • November 12: Confirm approval of edited video to allow NFOSD to share

Questions?

Email Elizabeth (Elizabeth@nfosd.com) for more information about this project.

 

 



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Dysphagia in the News: Celebrating Innovation

Ruth Martin, Associate Dean for Graduate and Postdoctoral Programs in the Faculty of Health Sciences at Western University, will be receiving the Vanguard Awards Innovator of the Year honor from WORLDiscoveries for commercialization and entrepreneurship involved in developing the Abilex Oral Motor Exerciser, a device designed to exercise and strengthen the jaw, tongue and mouth for people who have difficulty swallowing.


Celebrated innovation aids patients in swallowing

 



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Faces of Dysphagia 2018

Meet our 2018 Faces of Dysphagia

June is recognized as National Dysphagia Awareness Month. The following photos show our brave volunteers: patients, families, and caregivers who don’t let dysphagia hold them back.

Thank you to our volunteers and generous donors who sponsored our social media campaign to help raise funds for dysphagia advocacy, support, education, and research!

continue reading →



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Albert J. Ingrassia Paint It Forward Event

By Lisa Ingrassia-Neuman

The night began with me addressing a packed room of painters with the following, “I’m going to ask a few questions. If they apply to you, please keep your hands up. Raise your hand if you have a loved one who has suffered from a stroke. Raise your hand if you have a loved one who suffers from Alzheimer’s. Raise your hand if you have a loved one who suffers from dementia. Raise your hand if you have a loved one living with multiple sclerosis. Raise your hand if you have a loved one who is a head and neck cancer patient.” The list of individuals affected by a swallowing disorder is endless, and at that point the entire room had their hands up. I then told my guests, “And that, folks, is the reason why we are here to paint it forward, for everyone feeling isolated by living with a swallowing disorder.”

I founded the Albert J. Ingrassia fund after my father fought a very long brave battle with complications from Stage IV head and neck cancer. He suffered from severe dysphasia and spent the last four years of his life living on a PEG tube, unable to eat or drink orally. When my father lost his ability to eat, I lost a tremendous piece of my heart.

Our entire society revolves around food and meals. For people with dysphagia, like my Dad, life as you know it ceases to exist. Several studies conclude that between 300,000 and 600,000 individuals in the United States are affected by a neurogenic dysphagia each year. 10 million Americans are evaluated each year for swallowing difficulties. Because this disorder cuts across so many diseases, dysphagia is poorly understood and often under diagnosed. It is my personal mission to raise awareness and help the countless patients and families living with dysphagia.

Each year, I host Paint and Sip night where a portion of the ticket sales go to the Albert J. Ingrassia fund, a special endowment fund with the National Foundation of Swallowing Disorders.

On May 6th, nearly 45 people attended the Albert J. Ingrassia Paint It Forward held in Red Bank, NJ. We are truly blessed to be supported by so many people and to have held this event for the second year in a row. Words cannot describe how incredible it was be surrounded by people who are touched by our mission and story. To know that our efforts are truly having an impact is what continues to motivate us.



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IDDSI 2018 Contest

The National Foundation of Swallowing Disorders & the International Dysphagia Diet Standardisation Initiative Presents:

The 2018 #IDDSIchallenge! 


You are invited to participate in a contest showing the world how you have been creating culinary delights using the IDDSI Framework.

 

Dates:  June 1 – June 15, 2018  Post your creations for National Dysphagia Awareness Month

June 20 – June 27, 2018 Vote for your Favorite Creations

June 28 – June 30, 2018 Announce the Top 3 Winners

 

Prizes:  3 prizes of $100 gift cards

 

Who can enter? Everyone! You can enter as an individual, a family, a corporation, a restaurant, a healthcare organization.

 

How to enter:

1. Record a short video (no more than 60 seconds) to show off your culinary creation and how you have used the IDDSI testing methods

2. Post your video onto Facebook and include #IDDSI and tag @NFOSD in your post between June 1 – June 15 (deadline is midnight GMT)

**Make sure your post is public so that we can share this!**

3. Like and share your creation on Facebook with all of your friends!

Here’s an example:

Rules and Regulations Apply: Click Here for more Information

 

How to win:

1. All videos will be viewed by an expert panel of judges and the top 5 entries will be selected for voting by the global audience.

2. Vote using ‘likes’ to choose the winners.

 

Meet the Judges: Click Here

Winners will be announced and showcased on both the IDDSI and NFOSD websites.

 

What is IDDSI?

The IDDSI Framework was developed to provide safety, through a standardised way of naming and describing texture modified foods and thickened liquids for people with swallowing difficulties across the lifespan.  It is a person-centred rather than profession-centred approach providing practical and validated measurement techniques to ensure that what is prepared in hospital, can reliably be prepared at home or other settings to reduce the risk of choking and aspiration. The common language of the framework can be used by persons with dysphagia, caregivers, clinicians, food service professionals and industry partners, allowing us to speak the same language the world over. Learn more at: www.iddsi.org