It’s hard thinking of something as rare when one in 20 people are at risk of experiencing it in their lifetime. But that’s the situation with rare diseases. There are more than 7,000 of them and each affects under 200,000 people. In some cases they may only affect a few hundred people. But for each … Continue reading Rare Disease Day – fighting for awareness and hope
Patient Advocacy
Performance, Passion and Progress: and that’s just page one of our 2018 Annual Report
It’s hard to sum up the activities and achievements of a year in a single document, let alone one that’s just 24 pages. But that’s what we have done in putting together our 2018 Annual Report. It’s a look back at the year just gone, the highlights, the low lights (spoiler alert – there weren’t … Continue reading Performance, Passion and Progress: and that’s just page one of our 2018 Annual Report
Living with sickle cell disease: one person’s story of pain and prejudice and their hopes for a stem cell therapy
Whenever we hold an in-person Board meeting at CIRM we like to bring along a patient or patient advocate to address the Board. Hearing from the people they are trying to help, who are benefiting or may benefit from a therapy CIRM is funding, reminds them of the real-world implications of the decisions they make … Continue reading Living with sickle cell disease: one person’s story of pain and prejudice and their hopes for a stem cell therapy
Join us tomorrow at noon for “Ask the Stem Cell Team about Sickle Cell Disease”, a FaceBook Live Event
As an early kick off to National Sickle Cell Awareness Month – which falls in September every year – CIRM is hosting a “Ask the Stem Cell Team” FaceBook Live event tomorrow, August 28th, from noon to 1pm (PDT). The live broadcast will feature two scientists and a patient advocate who are working hard to … Continue reading Join us tomorrow at noon for “Ask the Stem Cell Team about Sickle Cell Disease”, a FaceBook Live Event
A brief history of the Stem Cell Agency
On Wednesday, August 15 the California State Assembly Select Committee on Biotechnology held an informational hearing on CIRM as part of its mission of ensuring the legislature is up to date and informed about the biotech industry in California. The committee heard from CIRM’s President and CEO Dr. Maria T. Millan and the Vice Chair … Continue reading A brief history of the Stem Cell Agency
The story behind the book about the Stem Cell Agency
WHY I WROTE “CALIFORNIA CURES” By Don C. Reed It was Wednesday, June 13th, 2018, the launch day for my new book, “CALIFORNIA CURES: How the California Stem Cell Research Program is Fighting Your Incurable Disease!” As I stood in front of the audience of scientists, CIRM staff members, patient advocates, I thought to myself, … Continue reading The story behind the book about the Stem Cell Agency
SCID kid scores big on TV
One of the stories I never tire of telling is about Evie Vaccaro. She’s the little girl who was born with a fatal immune condition called severe combined immunodeficiency or SCID. Children with this condition have no immune system, no protection against infections, and often die in the first two years of life. But thanks … Continue reading SCID kid scores big on TV
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
TELL ME WHAT I NEED TO KNOW: A Patient Advocate’s guide to being a Patient Advocate
A few weeks ago I was at the CIRM Alpha Stem Cell Clinic Network Symposium at UCLA and was fortunate enough to hear Gianna McMillan speak about patient advocacy. It was a powerful, moving, funny, and truly engaging talk. I quickly realized I wanted to blog about her talk and so for the first few … Continue reading TELL ME WHAT I NEED TO KNOW: A Patient Advocate’s guide to being a Patient Advocate
A road trip to the Inland Empire highlights a hot bed of stem cell research
It took us longer than it should have to pay a visit to California’s Inland Empire, but it was definitely worth the wait. Yesterday CIRM’s Roadshow went to the University of California at Riverside (UCR) to talk to the community there – both scientific and public – about the work we are funding and the … Continue reading A road trip to the Inland Empire highlights a hot bed of stem cell research
The Stem Cellar 