I deal with many patient advocates and that is one of my favorite parts of my job. They are wonderful! However some go above and beyond the call of duty and are model advocates in my opinion. Others do some great things, but also some negative things such as attacking the FDA publicly, which serves …
The model of a patient advocate: what are the key elements of success? Read More »
Yesterday I was visiting L.A. and happened by the Walk of Fame, seeing many stars including the one of Barbra Streisand (below). Streisand has been doing interviews (see article here ) for both TV and newspapers regarding her advocacy for heart disease research for women. Interestingly, this interest of Streisand’s directly involves stem cells according to …
There is a kind of invisible cultural wall between patients such as cancer patients and biomedical scientists like me, but this wall does not have to exist and indeed it is a negative wall as patients, scientists, doctors, agencies, and advocates can achieve far more together than apart. But the wall is surprisingly strong. Last …
CIRM Board Member, Jeff Sheehy, has a wonderful piece in Nature Medicine on why patient advocates play a critical role in decision making on research priorities (hat tip to Amy Adams who first blogged on Sheehy’s piece). Patient advocates bring a unique and valuable perspective to the table. Their role in guiding CIRM research funding …
Why scientists must be advocates too: Jeff Sheehy Read More »
A new paper on stem cells for paralysis from a Mayo Clinic team has sparked a bit of legitimate hope but also some hype in the media. The publication was in Nature Communications. It is entitled “Intrathecal delivery of adipose-derived mesenchymal stem cells in traumatic spinal cord injury: Phase I trial.” The approach was direct injection …
Perspectives on new stem cells for paralysis paper & media coverage Read More »
BrainStorm Cell Therapeutics is developing Nurown, an investigational therapy intended for treating ALS. I recently posted about BrainStorm and its prospects for providing real hope on stem cells for ALS. I see it as a long shot. The ALS community needs real hope, but one challenge is determining how good clinical data have to be to …
BrainStorm Cell Therapeutics Hail Mary with FDA on Nurown for ALS Read More »
Toward the end of each year, I make stem cell & regenerative medicine predictions for the coming year. It’s a fun tradition here on The Niche that goes way back. The stem cell field has changed dramatically as reflected in each year’s predictions. Here’s a list of past predictions with my grades of how they …
2023 stem cell & regenerative medicine predictions Read More »
There have been rare instances like with scientist James Wilson where researchers were involved in what I would call major misconduct but somehow managed to bounce back. In a sense, they were given second chances in part by regulators but also by other scientists or supporters. However, after extraordinary misconduct, especially contributing to the death …
2nd chances after big misconduct? He Jiankui, James Wilson, others Read More »
As both a scientist who works on stem cells, cancer, and CRISPR, and a research advocate I’ve been fortunate to meet many patient advocates over the years. Some have been participants in clinical trials themselves. Benefits & risks of clinical trial participation It is very sobering to find out that a clinical trial participant has …
Weekly reads: death in CRISPR trial, sickle cell, nose picking & dementia, epilepsy Read More »
An FDA FOIA dump of text messages of former Commissioner Stephen Hahn suggests that a Texas regenerative firm called Direct Biologics benefited from political pressure on him in mid-2020. Then he was asked again to help in early 2021. This was shortly before he resigned at the start of the Biden Administration. The push came from …
FDA leader Stephen Hahn was pressured to aid Texas firm Direct Biologics Read More »