Western Michigan and Syracuse football programs team up Friday night to shine a spotlight on Rare Disease Community in 2018 opener

RDAG 18 GRAPHICUplifting Athletes is proud to announce that the Western Michigan and Syracuse football programs have joined forces for their upcoming 2018 season opener to shine a spotlight on the Rare Disease Community.

The chapter leaders from each school, with the support of both universities, worked together to make the match-up between the Broncos and Orange on Friday, August 31 at Waldo Stadium an Uplifting Athletes Rare Disease Awareness Game.

Players from each team will wear Uplifting Athletes stickers on their helmets to support Uplifting Athletes and the Rare Disease Community. During the third time-out in the first quarter, rare disease patients will be the honored on the field in recognition of the two programs coming together to support one cause.

14-year old rare disease patient Chloe Hunt from Alagille Syndrome Alliance, along with her mother and twin sister, will join the teams on the field.

The Western Michigan chapter leaders were inspired by Syracuse Chapter President and offensive lineman Sam Heckel’s rare disease journey and the courage shown by Orange quarterback Sam Culpepper during his recent cancer battle.

Thank you to the athletic departments at Western Michigan and Syracuse for supporting the football student-athlete leaders of each chapter by allowing them to recognize the Rare Disease Community as part of this game.


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.”