Members of NFOSD visiting UC Davis in 2013 At CIRM, we have the resources to fund promising research through clinical trials. These projects are expensive—often costing tens of millions of dollars. Phase 2 clinical trial But many programs that reach our Board begin years earlier, in much humbler circumstances, powered by patient advocates, grassroots fundraising, … Continue reading The power of the patient advocate: how a quick visit led to an $11M grant to fund a clinical trial
patient advocates
“A new awakening”: One patient advocate’s fight for her daughters life
We often talk about the important role that patient advocates play in helping advance research. That was demonstrated in a powerful way last week when the CIRM Board approved almost $12 million to fund a clinical trial targeting a rare childhood disorder called cystinosis. The award, to Stephanie Cherqui and her team at UC San … Continue reading “A new awakening”: One patient advocate’s fight for her daughters life
Stem Cell Agency celebrates 50 clinical trials with patient #1
Yesterday the CIRM Board approved funding for our 50th clinical trial (you can read about that here) It was an historic moment for us and to celebrate we decided to go back in history and hear from the very first person to be treated in a CIRM-funded clinical trial. Rich Lajara was treated in the … Continue reading Stem Cell Agency celebrates 50 clinical trials with patient #1
Study highlights the problem patients have in taking part in clinical trials and one simple way to change that
Let’s face it, when you are feeling crummy all you want to do is be quiet, rest and not have to deal with anyone else. So, it’s not surprising that a new survey of people with primary mitochondrial disease (PMD) found that many were often less than enthusiastic about taking part in a clinical trial. … Continue reading Study highlights the problem patients have in taking part in clinical trials and one simple way to change that
CIRM 2017, A year of accelerating stem cell treatments
At CIRM we have our focus very clearly on the future, on accelerating stem cell therapies to patients with unmet medical needs. But every once in a while, it’s a good idea to look back at what you have already done. Knowing where you came from can help you get to where you are heading. … Continue reading CIRM 2017, A year of accelerating stem cell treatments
CIRM’s Push for Operational Excellence
This blog is part of the Month of CIRM series CIRM adopted the mantra of “operational excellence” as a way to strengthen our problem‑solving, teamwork, and overall results. Getting better The Business Dictionary defines operational excellence as: “A philosophy of the workplace where problem-solving, teamwork, and leadership results in the ongoing improvement in an organization.” … Continue reading CIRM’s Push for Operational Excellence
Treatments, cures and clinical trials: an in-person update on CIRM’s progress
Patients and Patient Advocates are at the heart of everything we do at CIRM. That’s why we are holding three free public events in the next few months focused on updating you on the stem cell research we are funding, and our plans for the future. Right now we have 33 projects that we have … Continue reading Treatments, cures and clinical trials: an in-person update on CIRM’s progress
FDA patient forum 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 patient forum to guide its decision making
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.