Natalie Stack 5th Patient Stem Cell and Gene Therapy Trial – March 29, 2022
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 […]
Tyler Joynt – 4th Patient in the Stem Cell and Gene Therapy Trial on November 15, 2021
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, […]
Stem Cell Trial Phase I/II Updates by Stéphanie Cherqui, PhD
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 […]
7th Annual Hearts for Hadley
Friday, October 23, 2020 7th Annual Hearts for Hadley In Honor of Hadley Alexander JUMP, Boise, Idaho For information: Marcu Alexander hearts4hadley@gmail.com
Annual Swing Golf Tournament
Thursday Oct 22, 2020 Annual Swing Golf Tournament In honor of Jenna and Patrick Partington Swing Golf Event – Catta Verdera Country Club For information contact Kevin Partington Kevin.Partington@cushwake.com
Aarav’s Time To Shine – Grand Gala Celebration
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 mukund.khalasi@icloud.com
8th Annual Swing, Shoot and Liv Golf Classic
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
Paint the Town Purple
Summer 2020 Paint the Town Purple In honor of Olivia Little Port Elgin, Ontario Canada For information: Erin.Little@livalittlefoundation.com
Aidan’s Army Golfs Fore a Cure Tournament
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 – In Honor of Isaac Andrews
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 […]
