Notre Dame chapter holds Uplifting Experience event for rare disease patient families


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An important part of the heritage of our Notre Dame Chapter is a bowling event they began in 2014. The event was the main fundraiser instead of a Lift For Life event.

Now that the Fighting Irish are able to hold a Lift For Life, the bowling event took on a new and exciting new chapter this year as an Uplifting Experience with the focus squarely on rare disease patients.

Throughout its first four years of the bowling event, a number of rare disease patients were on hand at Strikes & Spares Event Center in Mishawaka, Indiana. The impact those patients had on the Notre Dame football players laid the foundation for this Notre Dame Chapter event to become an Uplifting Experience.

More than 50 people signed up including rare disease patients, parents, caregivers and siblings. They all enjoyed two hours on the lanes with more than 20 members of the 2018 Notre Dame football team.

“Thanks again for inviting us to the bowling event. Both of our boys had so much fun,” one parent said. “When we left, (our son’s) little brother said, ‘I play ball with the big boys’. We really enjoyed it and are so grateful to be a part of this type of community.”

The event was free of charge and was opened up to any and all rare disease patients and their families in the South Bend area.

“It was great to see how happy the kids were and how great the players were with the kids,” said Uplifting Athletes Director Rare Disease Engagement Rob Long, who attended the event. “A bowling event like this a perfect Uplifting Experience and benefits everybody involved.”

The Uplifting Athletes program initiative, Uplifting Experiences, aims to bring the Rare Disease Community closer to our network of college football student-athlete chapter members by providing unique opportunities to rare disease patients and their families.

“We are uniquely positioned to provide these opportunities to rare disease patients and their families and we are excited that it was the Notre Dame chapter that helped get this program off the ground,” Long said. “It’s a extension of our chapter network using its platform to directly reach out and interact with the Rare Disease Community we all support.”

 

 

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