Wow, what a year 2022 has been so far! I have a wonderful boyfriend in my life (we are getting a puppy soon), the beloved show, This is Us is ending and I was the 5th patient to receive a stem cell transplant! For those of you who don’t know the show, This is Us, the show’s message […]
By Tyler Joynt, San Diego, California As a kid, I really only knew three things about cystinosis. Doctors, sickness, and the San Diego Zoo. From an early age I remember throwing up often, going to the ER regularly, and seeing doctors frequently. I was lucky enough to be diagnosed before I was two years old,
Dr. Stéphanie Cherqui provided an update on the stem cell gene therapy trial at the 2022 Day of Hope Family Conference. Five patients have now received the transplant, and she has good follow-up data on two of them. White blood cell cystine levels in these patients have gone down to normal despite not being on
Saturday, October 3, 2020 Aarav’s Time To Shine – Grand Gala Celebration In honor of Aarav Khalasi The Sutter Club, Sacramento, California For information contact Mukund Khalasi email@example.com
Saturday, September 12, 2020 8th Annual Swing, Shoot and Liv Golf Classic In honor of Olivia Little Saugeen Golf Club, Port Elgin, Ontario, Canada For information: Erin.Little@livalittlefoundation.com
Aidan’s Army Golfs Fore a Cure Tournament in honor of Aidan O’Leary has been postponed until 2021. We will post an update as soon as we have further details. Thank you for your understanding!
Pins for a Purpose – Bowling TournamentWhen: Saturday, October 2, 2021Where: Drkula’s Bowl ( 6710 Cahill Ave, Inver Grove Heights, MN 55016)Time: 11:30am (Check-in for Moonlight bowling and silent auction), 3:00pm (Dinner) Isaac Andrews is an animated 4-year-old boy whose smile and laughter can light up a room. Talking to him you would never know