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Dysphagia Research Study Opportunity for Patients/Caregivers

A Medical Recruiter for Connected Research and Consulting, a Medical Market Research Company contacted the National Foundation of Swallowing Disorders to seek volunteers interested in participating in a paid research study.

Connected Research and Consulting has a client that is looking to gather opinions from patients and caregivers impacted by dysphagia.

This would consist of a 1-hour phone/web interview and your compensation would be $150. This research is aimed at finding a possible and hopeful way to get better help for those who suffer from dysphagia. Connected Research and Consulting is not selling anything, and is  not employed by any drug company.

Volunteers’ identities will remain anonymous. If you are interested in participating, please call Sherry at 561-299-5700, or email her at sherry@connectedrc.com.

Company website: https://connectedrc.com/

 

More Details:

  • Incentive will be: $150, paid by check after the interview
  • Discussions will take place between Monday, December 3rd thru Friday, December 7th, at various convenient times
  • Respondents must successfully pass a short set of questions first before scheduling to participate
  • It is a telephone/web interview, so participants will need a phone and a computer (laptop or desktop only)
  • Looking for patients and the caregivers of patients that are between the ages of 40-75, have been diagnosed with dysphagia due to stroke, cancer, dementia, Parkinson’s disease, MS, and other similar conditions, but not limited to only these conditions. Additionally, caregivers should ideally live with and prepare meals for the patient with dysphagia.

 

This is only for market research purposes, at no time will sales of any kind be involved. Connected Research and Consulting is only interested in any active feedback and information pertaining to the discussion topic that respondents can share from their experiences and expertise. They never divulge respondent identity or details to their end client, and all results from this study will be presented in an aggregate form ONLY and will be kept confidential.



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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.