“My hope for Brooke is she can one day look back and we have to remind her of the disease she once had.” That’s Clay Emerson’s biggest hope for his young daughter Brooke, who has cystinosis, a life-threatening genetic disease that appears by the age of two and over time causes damage to many organs, … Continue reading A life-threatening childhood disease and the CIRM-funded team seeking a stem cell cure featured in new video
Stephanie Cherqui
The power of the patient’s voice: how advocates shape clinical trials and give hope to those battling deadly diseases
Tennis great Martina Navratilova was once being interviewed about what made her such a great competitor and she said it was all down to commitment. When pressed she said “the difference between involvement and commitment is like ham and eggs; the chicken is involved but the pig is committed.” That’s how I feel about the … Continue reading The power of the patient’s voice: how advocates shape clinical trials and give hope to those battling deadly diseases
Funding stem cell research targeting a rare and life-threatening disease in children
If you have never heard of cystinosis you should consider yourself fortunate. It’s a rare condition caused by an inherited genetic mutation. It hits early and it hits hard. Children with cystinosis are usually diagnosed before age 2 and are in end-stage kidney failure by the time they are 9. If that’s not bad enough … Continue reading Funding stem cell research targeting a rare and life-threatening disease in children