It is with a heavy heart that we let you know that Riley Smith, daughter of Trent and Julie Smith, passed away, January 19th after a brave battle with Niemann-Pick Disease, Type C. Riley and her family represented many individuals with the disease and helped raise awareness and funds. They also helped Notre Dame start developing undergraduate studies on rare diseases and collaborative programs like Rare Health Exchange. Riley loved sports and her strength and perseverance were always inspirational to us at ND.
Riley’s father currently has a fundraising challenge to support Coach Matt Painter of Purdue Men’s Basketball in the Infiniti Coaches’ Charity Challenge.
Here is how you can help: we ask all of you to please vote for Coach Painter in memory of Riley. There are is not much time left to help him win 100K for NPC research (he is currently ranked 3rd). http://promo.espn.go.com/espn/contests/infiniti/2014/
You can also view here a short version of the video CRND made with the Smith family in 2011. Filmed at the University of Notre Dame by Liz Hodge (Foundation for Biomedical Research), SurvivorTales: Niemann-Pick Type C tells the story of Riley Smith and her brother Keaton Smith suffering from a rare and fatal genetic disease and research that could save their lives. It stars the Smith Family, Drs. Kasturi Haldar and Cindy Parseghian. The show won a Telly Award in 2011
If you wish to see the full version please email email@example.com
(9/11/1996 – 12/12/2013)
On December 12th, 2013, Tylor White-Richardson passed away after a brave battle with Niemann-Pick Type C (NP-C) disease. Tylor was a budding ball player till he was struck by symptoms that took six years to diagnose as NP-C http://fight4tylor.blogspot.com. He and his family represented many individuals with the disease and helped raise awareness and funds. Tylor and his family helped Notre Dame undergraduates better understand NP-C from a patient perspective and learning the challenges of having a rare disease. His outgoing personality and sense of humor helped all of us at CRND to see the importance of seeking treatments no matter the challenge. Our thoughts and prayers go out to Tylor’s family in this difficult time.