Janni Lehrer-Stein was just 26 when she was diagnosed with a degenerative eye disease and told she was going to be blind within six months. The doctor who gave her the news told her “But don’t worry, people like you are usually hit and killed by a bus long before they go completely blind.” At … Continue reading A Patient Advocate’s Personal Manifesto
Patient Advocacy
FDA creates a forum for patients to guide its decision making
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
Advocating for Huntington’s Disease: Daniel Medina’s Journey
In honor of Huntington’s Disease (HD) Awareness Month, we’re featuring a guest blog by HD patient advocate Daniel Medina. Daniel became actively involved in the HD community when he learned that his younger brother was at risk for inheriting this devastating neurodegenerative disease. Since then he has been a champion for HD awareness by organizing … Continue reading Advocating for Huntington’s Disease: Daniel Medina’s Journey
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.
Stem Cell Stories That Caught Our Eye: Free Patient Advocate Event in San Diego, and new clues on how to fix muscular dystrophy and Huntington’s disease
Stem cell research is advancing so fast that it’s sometimes hard to keep up. That’s one of the reasons we have our Friday roundup, to let you know about some fascinating research that came across our desk during the week that you might otherwise have missed. Of course, another way to keep up with the … Continue reading Stem Cell Stories That Caught Our Eye: Free Patient Advocate Event in San Diego, and new clues on how to fix muscular dystrophy and Huntington’s disease
You Are Invited: CIRM Patient Advocate Event, San Diego April 20th
The word “cured” is one of the loveliest words in the English language. Last year we got to use it twice when we talked about stem cell therapies we are funding. Two of our clinical trials are not just helping people, they are curing them (you can read about that in our Annual Report). But … Continue reading You Are Invited: CIRM Patient Advocate Event, San Diego April 20th
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
A ‘Call to Action’ for change at the FDA
It’s bad enough to have to battle a debilitating and ultimately deadly disease like Huntington’s disease (HD). But it becomes doubly difficult and frustrating when you feel that the best efforts to develop a therapy for HD are running into a brick wall. That’s how patients and patient advocates working on HD feel as they … Continue reading A ‘Call to Action’ for change at the FDA
Stem Cells Profile in Courage: Pat Furlong, Patient Advocate
One of the true joys for me in helping put together this year’s Annual Report was getting to know the patients and patient advocates that we profiled in the report. These are some extraordinary individuals and the short profiles we posted only touch the surface of just how extraordinary. So, over the next few weeks … Continue reading Stem Cells Profile in Courage: Pat Furlong, Patient Advocate
A patient perspective on how stem cells could give a second vision to the blind
October is Blindness Awareness month. In honor of the patients who suffer from diseases of blindness and of the scientists and doctors who work tirelessly to develop treatments and cures for these diseases, we are featuring an interview with Kristin Macdonald, a woman who is challenged by Retinitis Pigmentosa (RP). RP is a genetically inherited … Continue reading A patient perspective on how stem cells could give a second vision to the blind
The Stem Cellar 