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 Moveon.org 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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Stem cell therapies for diabetes: wrap them up

A pancreatic beta cell.
Image by Itkin-Ansari lab

Type 1 diabetes has been a major focus of CIRM funding, including a disease team award to San Diego-based ViaCyte that is expected to bring a therapy to trial within four years.

Sanford-Burnham has a great post on their blog about how stem cell therapies for diabetes might work. They discuss the work of Pamela Itkin-Ansari, who is working with ViaCyte to develop a way of wrapping transplanted cells to protect them from the immune system. They write:

Her laboratory has placed human pancreatic precursor cells in an immuno-protective device and transplanted them into mice. She was testing whether precursor cells will mature into productive beta cells in the body and whether the encapsulation device, made from a material akin to Gore-Tex, could prevent the immune system from attacking transplanted cells.

Early studies have been positive, they write.

“We were excited to see how well they did,” says Dr Itkin-Ansari. “We could see evidence of new beta cells forming and replicating. That meant the environment in the device was conducive to beta cell maturation and function. We wondered whether  T cells, although unable to penetrate the device, would cluster around it. Interestingly, we found no evidence of an active immune response, suggesting that the cells in the device were invisible to the immune system.”

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November 14: World Diabetes Day

Guest bloggers Chris and Lorraine Stiehl are CIRM Patient Advocate Coordinators*:

Sunday, November 14 is World Diabetes Day. Back in 2004, we joined the team that launched Prop 71 because of the opportunity that stem cells may provide for diabetes. We are now involved with CIRM as Advocacy Coordinators, working with all of you across the state to help bring the exciting research made possible by CIRM to the patient advocacy community. In our short time in this role, we have met many passionate and dedicated stem cell advocates who are working hard to find better treatments and cures for dozens of diseases.

In honor of World Diabetes Day, we thought we’d make diabetes the subject of our first blog posting. As you know, diabetes is a growing epidemic in California and across the globe. CIRM has funded numerous research projects involving diabetes including a Disease Team Research Award granted to UCSF and ViaCyte (you can see a complete list of diabetes awards funded by CIRM). Not only are these researchers seeking to create an unlimited supply of insulin-producing beta cells from stem cells, they are exploring ways to protect these cells from attack by the patient’s own immune system. Now that these researchers have experienced success in animal models, they are excited about moving their research into pre-clinical and clinical application – thanks to CIRM funding. This goal is in sight.

The Centers for Disease Control (CDC) estimates that there are over 24 million Americans who are living with diabetes. Approximately 3 million of these individuals have type 1 diabetes, the most severe form of this disease. Voluntary health organizations such as the Juvenile Diabetes Research Foundation (JDRF), a major funder of Prop 71, and the American Diabetes Association (ADA), continue to promote stem cell research and partner closely with organizations such as CIRM.

In addition to supporting research, JDRF and ADA work hard to create a platform for the diabetes community to organize itself, so advocates may more effectively advance research at both the state and federal levels of government. Websites such as www.tudiabetes.org and www.juvenation.org provide opportunities for those with diabetes to build relationships with one another and find daily support. Translating the deeper connections made possible through social media into offline relationships is also critical. That is why JDRF is hosting Type 1 Talk on World Diabetes Day, November 14. Additionally, ADA is actively promoting World Diabetes Day and their activities may be found on their website.

As Patient Advocate Coordinators for CIRM, we hope to educate, excite and empower advocates involved in all diseases that demand a cell-based solution such as those found in stem cell research. We look forward to working with all of you in the coming months And if you want to keep up with stem cell research more broadly become a fan of CIRM on FaceBook.

Lorraine Stiehl also serves as the National Chair of Grassroots Advocacy for JDRF and was their Volunteer of the Year for 2010. She will be one of the speakers on the Type 1 Talk webcast.

* This entry was updated 11/16 to reflect the proper title for Chris and Lorraine Stiehl: "CIRM Patient Advocate Coordinators"

Protein in Pancreas May Lead to New Therapy for Type II Diabetes

Researchers at the Burnham Institute for Medical Research and the University of California, San Diego have found parallels between how the pancreas develops in the embryo and type II diabetes (also known as adult diabetes). When the pancreas develops in an embryo, a protein called Wnt (pronounced “wint) helps control how the cells mature into insulin-producing cells. In most adults, the pancreas contains very little Wnt protein, but in people with type II diabetes Wnt protein is abundant in the pancreas. The authors suggest that Wnt could be a target for new type II diabetes therapies.

Experimental Diabetes Research: January 20, 2009
CIRM funding: Seung-Hee Lee (T2-00004), Carla Demeterco (T2-00003)

Related Information: Press Release, Burnham Institute for Medical Research