INTERVIEWS: NFL Players Discuss the Rare, Chronic, and Underserved Causes that Mean the Most to Them (Pt. 2)

Before you read on, make sure to check out Part 1 of our article. In Part 1, Green Bay Packers Cornerback Shemar Jean-Charles discusses why he supports the Alzheimer’s Association and how he has given back to his local community; Los Angeles Chargers Offensive Tackle Storm Norton also explains why the Alzheimer’s Association is so important to him. Today, New York Jets Defensive Tackle Tanzel Smart and his wife Jada talk about why raising Down syndrome awareness is so important to them. Indianapolis Colts Linebacker JoJo Domann also gives insight into his support for the Team Jack Foundation!

New York Jets Defensive Tackle Tanzel Smart: National Down Syndrome Society

To Tanzel Smart and his wife Jada, My Cause My Cleats is just one of the ways that they honor and remember Jada’s strong relationship with her aunt Deanna (DC), who had Down syndrome. Jada shares:

“My aunt DC lived with my grandmother her entire life. When my grandmother passed away in 2008, DC lived with us. She went to the St. Michael Special School in New Orleans where she learned to read, write, sew, and do so many other activities. My aunt was smart. She knew everybody’s birthday, was the life of the party, and was just truly loved by everyone.”

Unfortunately, DC passed away in 2015 at 52 years old before Tanzel was able to meet her. But being on the national stage allows him to help keep her memory alive. He explains:

“Jada and DC were very close. This cause means a lot to her, and it means a lot to me. I want to put a light on Down syndrome because I want to drive home that these people should be treated like regular people. They are still smart and capable. You don’t have to be shy or keep away from them.”

Part of raising awareness means combatting some of the many myths and misconceptions around Down syndrome that are still so prevalent. For example, some negative myths include that adults with Down syndrome are unemployable, that people with Down syndrome cannot be active members of the community, or that families will not find community support. But these are not true; rather, they propagate harmful discourse. 

“My aunt didn’t like saying that she had Down syndrome because she didn’t want to be seen as different. We shouldn’t look down on someone because they’re different. God made everyone look different but we’re all equal. I just want people to know that if you have Down syndrome, or have someone in your family with Down syndrome, it isn’t the end of the world. When I was pregnant, they asked if I wanted to screen my daughter for Down syndrome. But I knew that it didn’t matter to me because my daughter would be loved either way.”

Outside of My Cause My Cleats, Tanzel and Jada work to continue raising awareness on a more personal and local level. Tanzel says:

“My mother-in-law recently put on an event for St. Michael in New Orleans. We’re already planning that when we go back home, we’re going to visit St. Michael, play, eat ice cream, talk, just really strengthen those connections. We’re going to continue keeping the awareness alive and spreading the word.”

What is Down Syndrome?

Also known as Trisomy 21, Down syndrome is a genetic disorder in which someone is born with an extra copy of chromosome 21. Although considered to be the most common chromosomal disorder, with one in every 772 infants in the United States born with Down syndrome, it is important to continue raising awareness to fight the stigma associated with this condition. As Jada says:

“People with Down syndrome just have an extra chromosome. They’re still smart, regular, fully functioning humans, and a light should be shone bright on that. Just because someone has Down syndrome doesn’t mean they can’t do the things we can do.”

One important thing to remember about Down syndrome is that each person is an individual, and each person with Down syndrome has different health impacts. Some common physical characteristics and health impacts associated with Down syndrome include:

  • A flattened face
  • Almond-shaped eyes with upward-slanting eyelids 
  • A short neck
  • Small ears
  • Tiny white spots on the iris
  • Hypotonia (low/poor muscle tone) 
  • Loose joints
  • A single palmar crease
  • Small hands and feet
  • Short stature
  • Obstructive sleep apnea
  • Cognitive and developmental delays
  • Increased risk of gastroesophageal reflux, Celiac disease, hearing and vision loss, and Alzheimer’s disease

Beneficial therapies for those living with Down syndrome include speech therapy, occupational therapy, behavioral therapy, and speech therapy. 

About the National Down Syndrome Society

The National Down Syndrome Society (NDSS) is the leading human rights and advocacy organization for all individuals with Down syndrome. Founded in 1979, the NDSS supports and advocates for the community through three pillars: Community Engagement, Policy & Advocacy, and Resources & Support. 

Indianapolis Colts Linebacker JoJo Domann: Team Jack Foundation

In 2005, Jack Hoffman entered the world – and pretty immediately became a football fan. According to the Team Jack Foundation, Jack has been a lifelong Cornhusker fan, going to his first game in 2010. But in 2011, a life-threatening seizure sent Jack to the emergency room. Shortly after, doctors discovered that Jack had pediatric brain cancer. Now participating in a clinical trial for his brain tumor, Jack plays football for the West Holt Huskies; his family remains more committed than ever to fund the cure for childhood brain cancer. 

Indianapolis Colts Linebacker JoJo Domann played as a Cornhusker during his time at the University of Nebraska. Says Domann:

“I chose to support the Team Jack Foundation because I’ve been working with them for six years at the University of Nebraska with their Road Race that we would run every year. To be able to represent Team Jack and raise awareness for pediatric brain cancer just felt like the next right step and it felt natural. It’s close to home and it deserves awareness.”

Diffuse Intrinsic Pontine Glioma (DIPG): An Overview

One form of pediatric brain cancer, which the Team Jack Foundation discusses on its website, is a diffuse intrinsic pontine glioma (DIPG). DIPGs are a severe type of tumor that begins in the brain stem; they most often affect children between five to ten years old. The brainstem controls breathing, heart rate, nerves and muscles, and more. DIPG tumors form from glial cells. Unfortunately, the prognosis with DIPG is poor. Only around 10% of children survive two years following diagnosis, with a five-year survival rate of just 2%. Many believe that DIPG tumor formation is linked in some way to brain development, though the exact cause remains unknown.

Symptoms related to DIPG can include double or blurred vision, drooping eyelids, uncontrolled eye movements, nausea and vomiting, balance and coordination problems, problems chewing and swallowing, and facial drooping. Treatment options include radiation therapy, chemotherapy, and steroids. Surgery can be done to remove some tumor, though it is rarely a therapeutic option. New and effective treatment options are urgently needed. 

About the Team Jack Foundation

According to the Team Jack Foundation website, the Team Jack Foundation grew out of the dedicated community of Atkinson, Nebraska rallying around Jack Hoffman—the organization’s namesake and childhood brain cancer survivor. With support from the University of Nebraska, Husker Athletics, and people all across the country, the Team Jack Foundation has expanded its reach and impact to push for a cure for childhood brain cancer. Today, Team Jack unites and brings hope to families everywhere fighting childhood brain cancer.

Soon, in Part 3, we will hear from Pittsburgh Steelers Running Back Benny Snell Jr.  about the 22 Oats Strong Foundation, and Indianapolis Colts Defensive End Dayo Odeyingbo about Turner’s Heroes. Finally, Part 4 will focus on Indianapolis Colts Running Back Deon Jackson’s connection to the National Breast Cancer Foundation, and explain what led Colts Wide Receiver Ashton Dulin to raise awareness for the National Pancreatic Cancer Foundation.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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