Ara Parseghian: 21/5/1923 – 2/8/2017

We are sorry to share the sad news that Ara Parseghian, passed away yesterday. Ara was a former title winning coach of Notre Dame and founded the Ara Parseghian Medical Research Foundation, which has raised over $45million for research into Niemann-Pick disease.

Jim Green, President of the INPDA and founding member/former Trustee of NPUK has known and admired the work of the Parseghian family for over 20 years, and pays tribute to this incredible man here:

“What sad news to hear of the passing of Ara Parseghian. Ara was a very loving father, grandfather and great grandfather, whose reaction to challenge was always to do everything he could to make a difference. When three of his grandchildren were diagnosed with Niemann-Pick type C his reaction was to throw all his efforts into finding a treatment and ultimately a cure. His dedication and the tireless work of his truly amazing family have left a huge legacy for families affected by NPC around the world. Ara, through his support and the work of the foundation which carries his name, has left a lasting legacy that lives on in the scientific and clinical understanding of NPC and the relentless progress towards therapies. The thoughts and appreciation of the NPD families and communities around the World are with Mike and Cindy and their family at this difficult time.”