Alex (Alejandra) Ulrey passed away on September 3, 2021 after a long, brave fight with Niemann-Pick Type C, a dreadful, genetic neuro-degenerative disorder.
Our hearts are broken. Alex was the greatest gift any parent could hope for. She has been the light of our lives since we brought her home from Colombia. She was so enchanted with life and full of joy. As her symptoms become more severe over the years, she bore the pain and indignities imposed on her body with grace and without complaint or bitterness, finding and sharing joy in the smallest pleasures. Alex showed us every day what is truly important in life and for that, and for all the memories she gave to us, we are forever grateful.
Alex’s suffering and her passing have made us more determined than ever to find a cure for this dreadful disorder, so that others will not suffer as Alex did.
Please join us in making a gift in Alex’s memory to the Ara Parseghian Medical Research Fund (APMRF) at Notre Dame, which is dedicated to finding a cure for NPC disease.
Ara Parseghian was a legendary coach at Notre Dame – winning two national championships. Coach Parseghian and the Parseghian family launched the APMRF in 1994 when three of Cindy and Mike Parseghian’s children (Ara’s grandchildren) were diagnosed with NPC disease. Since then, the Foundation has funded over 100 laboratories and thanks in large part to their efforts, there are now multiple potentially life-saving therapeutics in clinical trials.
To give, please click on the Donate Now button below, fill out the giving form, and click on the Dedication Donation box on the bottom.
Thank you so much.