It’s not hard to find people who don’t like the US Food and Drug Administration (FDA), the government agency that, among other things, regulates medical therapies. In fact, if you type “do people like the FDA?” into an internet search engine you’ll quickly find out that for a lot of people the answer is “no”. … Continue reading FDA creates a forum for patients to guide its decision making
patient advocates
Stem cell agency funds Phase 3 clinical trial for Lou Gehrig’s disease
At CIRM we don’t have a disease hierarchy list that we use to guide where our funding goes. We don’t rank a disease by how many people suffer from it, if it affects children or adults, or how painful it is. But if we did have that kind of hierarchy you can be sure that … Continue reading Stem cell agency funds Phase 3 clinical trial for Lou Gehrig’s disease
Listening is fine. Action is better. Why patients want more than just a chance to have their say.
Type in the phrase “the power of the patient voice” in any online search engine and you’ll generate thousands of articles and posts about the importance of listening to what patients have to say. The articles are on websites run by a diverse group from patients and researchers, to advocacy organizations and pharmaceutical companies. Everyone … Continue reading Listening is fine. Action is better. Why patients want more than just a chance to have their say.
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
Asterias’ stem cell clinical trial shows encouraging results for spinal cord injury patients
When researchers are carrying out a clinical trial they have two goals: first, show that it is safe (the old “do no harm” maxim) and second, show it works. One without the other doesn’t do anyone any good in the long run. A few weeks ago Asterias Biotherapeutics showed that their CIRM-funded stem cell therapy … Continue reading Asterias’ stem cell clinical trial shows encouraging results for spinal cord injury patients
Making a deposit in the Bank: using stem cells from children with rare diseases to find new treatments
Part of The Stem Cellar series on ten years of iPS cells For Chris Waters, the motivation behind her move from big pharmaceutical companies and biotech to starting a non-profit organization focused on rare diseases in children is simple: “What’s most important is empowering patient families and helping them accelerate research to the clinical solutions … Continue reading Making a deposit in the Bank: using stem cells from children with rare diseases to find new treatments
Young man with spinal cord injury regains use of hands and arms after stem cell therapy
Hope is such a fragile thing. We cling to it in bad times. It offers us a sense that we can bear whatever hardships we are facing today, and that tomorrow will be better. Kris Boesen knows all about holding on to hope during bad times. On March 6th of this year he was left … Continue reading Young man with spinal cord injury regains use of hands and arms after stem cell therapy
Stem cell transplant offers Jake a glimpse of hope
Jake Javier surrounded by friends; Photo courtesy Julie Haener KTVU On Thursday, July 7th, Jake Javier became the latest member of a very select group. Jake underwent a stem cell transplant for a spinal cord injury at Santa Clara Valley Medical Center here in the San Francisco Bay Area. The therapy is part of the … Continue reading Stem cell transplant offers Jake a glimpse of hope
A Dream made me change my mind. Almost.
Dream Alliance: photo courtesy Daily Telegraph, UK On Friday I was faced with the real possibility that a horse had made an ass out of me. Over the years we have written many articles about the risks of unproven stem cell therapies, treatments that have not yet been shown in clinical trials to be safe … Continue reading A Dream made me change my mind. Almost.
Patient Advocates find their voice in a different language
Packed house for stem cell conference in Tokyo - Adrienne Shapiro front row, second from right One of the many wonderful things about travel is that it opens up your eyes and mind to the fact that, while there are many ways in which people around the world differ from each other, there are also … Continue reading Patient Advocates find their voice in a different language
The Stem Cellar 