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