When governments cut funding for scientific research the consequences can be swift, and painful. In Canada last week for example, the government of Ontario cut $5 million in annual funding for stem cell research, effectively ending a project developing a therapy to heal the damaged lungs of premature babies. Here in the US the federal … Continue reading CIRM public events highlight uncertain future of stem cell research
Patient Advocacy
Facebook Live – Ask the Stem Cell Team about Patient Advocacy
How often do you get to ask an expert a question about something that matters deeply to you and get an answer right away? Not very often I'm guessing. That's why CIRM's Facebook Live "Ask the Stem Cell Team About Patient Advocacy" gives you a chance to do just that this Thursday, March 14th from … Continue reading Facebook Live – Ask the Stem Cell Team about Patient Advocacy
Rare Disease Day – fighting for awareness and hope
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
Tips on how to be a great Patient Advocate from three of the best Advocates around
No one sets out to be a Patient Advocate. It’s something that you become because of something that happens to you. Usually it’s because you, or a loved one or a friend, becomes ill and you want to help find a treatment. Whatever the reason, it is the start of a journey that often throws … Continue reading Tips on how to be a great Patient Advocate from three of the best Advocates around
The power of one voice: David Higgins’ role in advancing stem cell research
As we start a new year, we are fine tuning our soon-to-be-published 2018 Annual Report, summarizing our work over the past 12 months. The report is far more than just a collection of statistics about how many clinical trials we are funding (50 – not too shabby eh!) or that our support has generated an … Continue reading The power of one voice: David Higgins’ role in advancing stem cell research
Stories that caught our eye: Is a Texas law opening up access to stem cell treatments working? Another CIRM-funded company gets good news from the FDA.
In 2017 Texas passed a sweeping new law, HB 810, which allowed medical clinics to provide “investigational stem cell treatments to patients with certain severe chronic diseases or terminal illnesses.” Those in favor of the law argued that patients battling life-threatening or life-changing diseases should have the right to try stem cell therapies that were … Continue reading Stories that caught our eye: Is a Texas law opening up access to stem cell treatments working? Another CIRM-funded company gets good news from the FDA.
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
Stem Cell Agency Heads to Inland Empire for Free Patient Advocate Event
I am embarrassed to admit that I have never been to the Inland Empire in California, the area that extends from San Bernardino to Riverside counties. That’s about to change. On Monday, April 16th CIRM is taking a road trip to UC Riverside, and we’re inviting you to join us. We are holding a special, … Continue reading Stem Cell Agency Heads to Inland Empire for Free Patient Advocate Event
Just a Mom: The Journey of a Sickle Cell Disease Patient Advocate [video]
Adrienne Shapiro will tell you that she’s just a mom. And it’s true. She is just a mom. Just a mom who is the fourth generation of mothers in her family to have children born with sickle cell disease. Just a mom who was an early advocate of innovative stem cell and gene therapy research … Continue reading Just a Mom: The Journey of a Sickle Cell Disease Patient Advocate
Engaging the patient to create a culture of health citizenship
One of the buzz phrases in healthcare today is “patient engagement”. It seems that you can’t go to a medical or scientific conference without coming across a panel discussion on the topic. A recent Partnering For Cures* event in San Francisco was no exception. But here the conversation took on a very different tone, one … Continue reading Engaging the patient to create a culture of health citizenship
The Stem Cellar 