Patient advocates report in on the World Stem Cell Summit

These past few days post-World Stem Cell Summit has seen a lot of activity online from patient advocates who attended the meeting. One goal of that meeting is specifically to update the advocates on what’s happening in stem cell research and also empower people to speak up about the value of the research. Bernie Siegel, who organized the meeting, seems to have succeeded if the number of advocates writing blog entries about his meeting is any indication.

Don Reed wrote a summary of his experiences at the meeting on his blog Stem Cell Battles. Reed was on a panel with me, Paul Knoepfler from UC Davis, and John Hlinko of and Left Action talking about how to use social media for stem cell advocacy. Reed wrote about the need for advocates to have answers at the ready:

For example, if someone says, “We can’t afford to fund stem cell research,” we immediately answer, “We can’t afford NOT to”—and it helps to have a few basic statistics handy, such as:

In 2009, America spent $1.65 trillion on chronic (incurable) disease. This is more than all federal taxes ($1.2 trillion) put together. It even exceeds that year’s installment of the national debt ($1.60 trillion). No nation can afford such costs—and it is why the economy is going down.

You can find some quick answers to common misconceptions about stem cell research in our stem cell basics.

Knoepfler has taken on the unusual role of stem cell scientist and patient advocate (he survived prostate cancer). He now has a blog about the science of stem cell research that he promotes through both Twitter and Facebook. He is a strong advocate for scientists speaking out and not being afraid to voice a public opinion about the value of research. On his blog, Knoepfler wrote:

Today I was part of a panel discussion on social media for the stem cell cause at the World Stem Cell Summit

Something that one of speakers said in the session that ended right before ours stuck with me as I was giving my talk. This person said that as part of the multi-dimensional team advocating for stem cell research that:

Scientists should just stick to the facts.

I like facts (aka data) as much as the next guy, but when it comes to advocating for stem cell research, my opinion is that scientists need to go beyond facts. We need to use our authority to voice opinions.

One point all three of us made is that whether you are a scientists, a patient or a member of the public who cares about finding new therapies it’s important to get your voice heard by writing your legislators, talking to friends or family members and sharing information about stem cell research through conversation, emails, facebook, twitter or in blogs.

One advocate who is on board with that message is Karmel Allison who wrote about her experiences at the World Stem Cell Summit on the blog A Sweet Life. She said:

At the conference, I heard about amazing progress being made towards modeling neurological disease, regenerating heart tissue, growing kidneys, and even curing HIV. Even with so many stem cell applications to talk about, though, diabetes was no small player, and I was surprised by how much I didn’t know about diabetes and stem cells.

I had heard about the hope for beta cell regeneration, in which stem cells would be differentiated into beta cells and implanted into diabetics so that we could essentially regrow our defunct pancreases. This source of beta cells would be far more renewable and therefore preferable to the current source– pancreases from cadavers, which are very hard to come by.

Allison also attended a talk by CIRM grantees at ViaCyte, who have a Disease Team Award to develop a stem cell-based therapy for diabetes. She wrote:

The challenge ViaCyte is aiming to overcome is that the stem cell development process needs to be done in a reliable, industrialized fashion such that it can be profitable. So, ViaCyte is using a stable, well-characterized line of human embryonic stem cells that are cultured for two weeks, differentiated into progenitor cells, frozen for transport if necessary, encapsulated in a biocompatible envelope, and, in theory, implanted. The envelope system is designed to protect the cells from immune rejection, thereby circumventing the need for genetic matching.


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