The Dysphagia Outreach Project Giving Event 2020
Guest Post By: Jessica Lasky, MS, CCC-SLP and Allison Boyer, MA, CCC-SLP
Who We Are
The Dysphagia Outreach Project is a 100% volunteer-run 501(c)(3) nonprofit organization that was founded in 2019. The mission of the Dysphagia Outreach Project is to provide meaningful assistance to low-income individuals affected by dysphagia via our Dysphagia Food Bank and educational efforts. This organization relies on both product and monetary donations to provide our recipients with the safest and most evidence-based dysphagia products shipped right to their front door at no cost to them. The Dysphagia Outreach Project also provides free education to patients and families, as well as clinicians and physicians. Additionally, the volunteer branch allows clinicians across the country to contribute to this cause and is the backbone of the organization which enables the Dysphagia Outreach Project to operate in all fifty states in the USA.
Dysphagia In Adults
How does dysphagia affect the adult population? Dysphagia affects 1 out of 25 adults annually; moreover, dysphagia is associated with lost workdays, with the average person with dysphagia missing 12-13 days annually. Women are more likely than men to report swallowing problems. Stroke and neurological causes are the number 1 and 2 reported etiologies (Bhattacharyya, 2014). Additionally, 1 in 6 adults reported swallowing difficulties. Of those, half of them never discussed their dysphagia concerns with their physician or medical team. They suspected that a lot of the dysphagia in these cases were treatable (Adkins, C et al., 2020).
Dysphagia After Stroke
In patients who are status post-stroke (cerebrovascular accident, or CVA), they recover swallowing function gradually, and therapeutic interventions for dysphagia generally are successful. In a prospective investigation of 128 patients admitted because of acute stroke, a swallowing abnormality was detected in 51% on clinical examination and in 64% on videofluoroscopy at initial presentation (Masiero S et al., 2008). Additionally, patients who have had a stroke are likely to decrease their dietary intake, which increases their risk of malnutrition or exacerbates existing malnourishment. In an investigation of the nutritional status of patients with stroke who were admitted to a rehabilitation service, 49% had malnutrition, and 65% of those with dysphagia were malnourished. (Odderson IR, et al., 1995).
Dysphagia In Pediatrics
An estimated 116,000 newborn infants are discharged from short-stay hospitals with a diagnosis of feeding problems, according to the National Hospital Discharge Survey from the CDC (National Center for Health Statistics, 2010). Prevalence is estimated to be 30%–80% for children with developmental disorders (Delaney, 2008). According to the Centers for Disease Control and Prevention (CDC), survey interviews indicated that within the past 12 months, 0.9% of children (approximately 569,000) ages 3–17 years are reported to have swallowing problems (Bhattacharyya, 2015; Black, Vahratian, & Hoffman, 2015). Additionally, a study by Kooi-van Es et al found that out of 295 children with neuromuscular disease, dysphagia and dysarthria had a pooled overall prevalence of 47.2% and 31.5%, respectively. The investigators reported that 90.0% of children with dysphagia had chewing problems, while 43.0% had swallowing problems, and 33.3% demonstrated difficulties with both chewing and swallowing (Kooi-Van et al, 2020). Lastly, prevalence rates of oral dysphagia in children with craniofacial disorders are estimated to be 33%–83% (Caron et al., 2015; de Vries et al., 2014; Reid, Kilpatrick, & Reilly, 2006).
Dysphagia Outreach Project Statistics
Here at The Dysphagia Outreach Project, no single person within the organization–from the founders to the occasional volunteer–is paid anything. We are a 100% volunteer-based organization. Any donations that come to us go straight to our recipients or to keep the lights on. As of the year 2020, 81% of our recipients are pediatric. Ninety percent of our pediatric recipients are under five years of age and 60% of our recipients are under 24 months old. We’ve received over 10,000 items and distributed over 8,600 of those items. Our average recipient family size is 3.6 people and the average recipient family income is just over $40,000 per year. Lastly, the Dysphagia Outreach Project boasts 151 registered volunteers, whose combined efforts are one of the primary reasons that we are able to provide the help that we do!
The Giving Event
In order for us to continue to provide this level of assistance to individuals and families in need, we need your help! The Dysphagia Outreach Project will be hosting its annual fundraiser, The Giving Event, which will be held the week of Giving Tuesday [Monday, November 30th to Friday, December 4th]. Following Thanksgiving, Giving Tuesday is a day associated with international charitable giving which marks the beginning of the Christmas and holiday season.
The Giving Event will go live on The Dysphagia Outreach Project’s Facebook page at 8 pm EST, every night for 5 nights, starting on Monday, November 30th. We will be awarding a TON of cool prizes [think exclusive CEU courses, memberships to hugely popular SLP subscription services, a brand new iPad, and MUCH MORE]!
How to Donate
For every $5 dollars you donate, your name will be entered on our virtual prize wheel. The more donations = the more entries! Each night of the Giving Event, a Dysphagia Outreach Project representative will spin the wheel to select a prize winner at random. To enter, please text GIVINGEVENT to 44-321 and follow the prompts to submit your donation. Together, we can make the holidays of those experiencing dysphagia a little bit brighter.
Adkins C, Takakura W, Spiegel BMR, Lu M, Vera-Llonch M, Williams J, Almario CV. Prevalence and Characteristics of Dysphagia Based on a Population-Based Survey. Clin Gastroenterol Hepatol. 2020 Aug;18(9):1970-1979.e2. doi: 10.1016/j.cgh.2019.10.029. Epub 2019 Oct 24. PMID: 31669055; PMCID: PMC7180111.
Bhattacharyya N. The prevalence of dysphagia among adults in the United States. Otolaryngol Head Neck Surg. 2014 Nov;151(5):765-9. doi: 10.1177/0194599814549156. Epub 2014 Sep 5. PMID: 25193514.
Caron, C. J. J. M., Pluijmers, B. I., Joosten, K. F. M., Mathijssen, I. M. J., van der Schroeff, M. P., Dunaway, . . . Koudstaal, M. J. (2015). Feeding difficulties in craniofacial microsomia: A systematic review. International Journal of Oral & Maxillofacial Surgery, 44, 732–737.
Delaney AL, Arvedson JC. Development of swallowing and feeding: prenatal through first year of life. Dev Disabil Res Rev 2008;14:105–17.
de Vries, I. A. C, Breugem, C. C., van der Heul, A. M. B., Eijkemans, M. J. C., Kon, M., & Mink van der Molen, A. B. (2014). Prevalence of feeding disorders in children with cleft palate only: A retrospective study. Clinical Oral Investigations, 18, 1507–1515.
Kooi-van Es M, Erasmus CE, de Swart BJM, et al. Dysphagia and Dysarthria in Children with Neuromuscular Diseases, a Prevalence Study. J Neuromuscul Dis. 2020 Mar 11. [Medline].
Masiero S, Pierobon R, Previato C, Gomiero E. Pneumonia in stroke patients with oropharyngeal dysphagia: a six-month follow-up study. Neurol Sci. 2008 Jun. 29(3):139-45. [Medline].
National Center for Health Statistics. (2010). Number of all-listed diagnoses for sick newborn infants by sex and selected diagnostic categories [Data File]. Retrieved from https://www.cdc.gov/nchs/data/nhds/8newsborns/2010new8_numbersick.pdf
Odderson IR, Keaton JC, McKenna BS. Swallow management in patients on an acute stroke pathway: quality is cost effective. Arch Phys Med Rehabil. 1995 Dec. 76(12):1130-3. [Medline].
Reid, J., Kilpatrick, N., & Reilly, S. (2006). A prospective, longitudinal study of feeding skills in a cohort of babies with cleft conditions. The Cleft Palate–Craniofacial Journal, 43,702–709.
Want to find out more about thickened liquids, altered food consistencies and thickeners? You can read more about them by clicking the links below!
The Great Thickener Challenge
Pre-Made Pureeds…..Not All the Same
The Cost of Thickened Liquids
Looking to give after this event is over? You can find their website here.