Lung airway stem cells awry in cystic fibrosis

Recent research from the University of Iowa suggests that people with cystic fibrosis have fewer of the stem cells that would normally repair the airway.

In most people, glands in the airway secrete bacteria-killing factors to help fight infection. These glands are also home to airway stem cells that rebuild the glands and keep them functioning normally. The Iowa team found that in people with CF, the airway stem cells had packed up and moved to the surface of airway rather than being nestled in the protective glands.

The team didn't find a clear cause and effect, but they suggest that with fewer airway stem cells, those glands are less able to repair themselves and secrete factors to help ward off infection. John Engelhardt, Roy J. Carver Chair in Molecular Medicine and professor and head of anatomy and cell biology who led the research, suggests that the next step might be to learn how to manipulate the environment, or stem cell niche, of those glands so that the stem cells will stay put and keep the glands functioning properly. Such a therapy could help prevent the infections that wreak such havoc on people with CF.

A University of Iowa press release quotes Engelhardt:

"This is the first demonstration that lung stem cell niches may be altered in CF." … "The future excitement of these findings relates to the potential of manipulating lung stem cells through neuropeptides or their inhibitors."

The work was published in the July 18 issue of July 18 issue of Journal of Clinical Investigation.

A.A.

Tracking stem cells using tricks learned in outer space

Stem cell science is set to get a boost from an unlikely source: outer space. It turns out that techniques devised to help telescopes peer through the blur of the earth's atmosphere could help scientists peak more deeply into tissues. If the technique, called adaptive optics or AO, works it might prove useful for scientists hoping to track the whereabouts of transplanted stem cells.

A group of researchers at the University of California, Santa Cruz, including CIRM grantee Joel Kubby, have formed the W. M. Keck Center for Adaptive Optical Microscopy, which will apply AO techniques to microscopes built for peering deep into tissues.

A press release from UCSC describes the project:

Principal investigator Joel Kubby, an associate professor of electrical engineering in the Baskin School of Engineering at UCSC, has worked on adaptive optics (AO) systems for large telescopes as well as for biological imaging. In astronomy, AO systems correct the blurring of telescope images caused by turbulence in the Earth's atmosphere. In microscopy, blurring is caused by the flowing cytoplasm of living cells.

"We can get beautiful images of cells close to the surface of the tissue, but if you want to go deep you're out of luck because of the degradation of the image. That was the motivation for this project," said co-investigator William Sullivan, professor of molecular, cell, and developmental biology at UC Santa Cruz. "For cell biologists, anything that improves imaging is a big deal, and this has the potential to open up vast areas of cell biology that have been opaque to us."

In stem cell research, for example, an important bottleneck in efforts to develop stem cell therapies has been the inability to follow injected stem cells and monitor their fates below the surface of the tissue. AO microscopy could solve this problem, and the California Institute for Regenerative Medicine (CIRM) has provided support for the work at UCSC, including funding that led to the development of the team's first AO microscope.

Knowing where a stem cell goes once it has been transplanted is critical to developing new therapies. Unless they go to where the damage is and stay there, those cells won't hold any long-term therapeutic benefit. Tracking cells within tissues could point to better ways of transplanting the cells and, eventually, to more effective therapies.

A.A.

A history of the stem cell lawsuit & what it meant to California scientists

Today U.S. District Judge Royce Lamberth dismissed a lawsuit that has been creating uncertainty for stem cell scientists for almost a year. The Washington Post quotes Lamberth's opinion:

“This Court, following the D.C. Circuit’s reasoning and conclusions, must find that defendants reasonably interpreted the Dickey-Wicker Amendment to permit funding for human embryonic stem cell research because such research is not ‘research in which a human embryo or embryos are destroyed,’ ” Lamberth wrote.

Here's some history on the lawsuit from this blog:

• What the embryonic stem cell research ban means to California researchers (8/27/2010)
• Government appeals stem cell ruling, claims harm to patients (8/31/2010)
• The ups and downs of federal funding for stem cell research (9/9/2010)
• Legal wrangling slows Stanford researcher's quest for a cure (9/15/2010)
• U.S. Appeals Court decision--good news, but not the final word (4/29/2011) 

A.A.

Discoverer of brain stem cells becomes president of ISSCR

The North County Times had a good story yesterday about Fred Gage's new role as the president of the International Society for Stem Cell Research. Gage is a renowned stem cell scientists at The Salk Institute for Biological Studies, which also wrote about his new role.

Gage was the first to show that people do, in fact, produce new brain cells after birth. In work that is especially close to my heart, he also showed that mice that get (to quote the 1999 press release) "regular voluntary exercise on running wheels" also grow more brain cells than sedentary mice.

More recently, Gage has had CIRM funding to carry out studies modeling human neurological diseases in a lab dish as a way of understanding and treating those diseases. We've blogged about his work here and here.

As the new president of ISSCR, which represents about 4,000 stem cell scientists internationally, Gage said he hoped to advocate for stem cell science to the public and to politicians. He also hopes to advance ISSCR's mission of moving basic stem cell discoveries into clinical therapies. He told the North County Times:

"There's been a lot of fantastic basic research that has been done," Gage said. "We realize that part of our mission as a society is to translate these basic science into clinical applications. We call it bench to bedside. We're thinking about ways to do this most effectively."…

"You have to have the basic biologists helping in this, but we need the clinicians too, even though they don't have the (scientific) knowledge," Gage said. "We need to bring them up to speed. And underlying all this, we need to have a very effective fundraising effort for the society."

Gage talked to CIRM about how stem cells can be used to mimic disease in a lab dish:



A.A.

Aggressive breast cancer treated with bone marrow stem cells

Last week brought a paper by Stanford researchers that has been a long, long time coming. It shows that 12-14 years after the experimental treatment, women with metastatic breast cancer benefited from high dose chemotherapy followed by transplantation of their own blood-forming stem cells. The paper was published online July 15 in Biology of Blood and Marrow Transplantation.

Back at the time when the group, which included CIRM grantee Irv Weissman, carried out this trial, doctors were rejecting high-dose chemotherapy for people with metastatic breast cancer. That therapy destroys the cancer, but also destroys the patient's bone marrow, which produces all blood and immune cells. That side effect would be deadly, but doctors can reinject bone marrow cells taken from patients before chemotherapy. This is the process that is used today for many types of cancers. However, doctors were finding that the whole bone marrow also contained some breast cancer cells. If those cells survived the transplantation they could spread and form a new, deadly cancer. So much for the chemotherapy.

Back when the Stanford scientists carried out their trial (between 1996 to 1998) Weissman had recently figured out how to purify the blood-forming stem cells in the bone marrow that are responsible for rebuilding the blood system. He and the team thought they could pull out just those cells from the patient's blood and use those cells to save the blood system after high-dose chemotherapy. If it worked, the chemotherapy would destroy the cancer, and the purified stem cells would save the blood system without reintroducing cancer cells lurking in the blood.

It all sounded good, but they were not sure whether their idea had worked until now. What they learned is that 23 percent of the women in their trial are still alive, compared to 9 percent of women who received unpurified stem cells.

A Stanford press release about the work quotes Weissman:

“Even with this small sample size, this paper demonstrates much-better overall and progression-free survival in those patients who received cancer-free stem cells.”

Senior author on the paper Judith Shizuru said in the release:

“Most people in the oncology community feel that this issue is a done deal, that high-dose chemotherapy does not work for patients with breast cancer. But our study suggests that the high-dose therapy strategy can be modified to include the use of cancer-free purified blood stem cells to yield better overall outcomes in women with advanced breast cancer.”

The authors are encouraging scientists to revisit high-dose chemotherapy for other cancers where it isn't traditionally offered. If it shows benefit for those patients it could open up a new form of therapy for a wide range of cancers.

This paper also highlights something that will continue to be true of all forms of stem cell research: It takes a long time to learn whether a therapy was truly effective. A decade from now we'll know whether the stem cell trials of today really worked. It's slow and frustrating, but papers like this one make the wait worth while.

A.A.

CIRM Bridges to Stem Cell Research students talk science in our new video

On July 8, 2011 the CIRM Bridges to Stem Cell Research trainees met in Burlingame, CA to share results from their research internships. Their enthusiasm for stem cell science made for a fun poster session where the students had a chance to share their internship research with other students, with CIRM staff and board members, and with California stem cell scientists who attended.

This video gives an overview of what these students have been up to:



First established in 2009, the Bridges programs fund students at community colleges and California State schools to take stem cell classes and do internship projects in established stem cell research labs in industry or at University of California and other major university campuses. (This map shows the Bridges to Stem Cell Research programs in purple.) Given the expense of working with stem cells, students at these schools would likely never have had a chance to participate in this cutting edge research. And without that experience, these students would likely be shut out of careers in California's growing stem cell industry. 

A.A.

Guest blogger Alan Trounson — July’s stem cell research highlights

Each month CIRM President Alan Trounson gives his perspective on recently published papers he thinks will be valuable in moving the field of stem cell research forward. This month’s report, along with an archive of past reports, is available on the CIRM website.

In the past month one paper struck me as especially important because it has the potential to alleviate a particularly nasty disability. Radiation therapy can buy time for patients with brain tumors, but the collateral damage it does to surrounding healthy tissue can cause problems with learning and memory, that grow worse over time. It is believed that this decline occurs because the radiation destroys the adult neural stem cells that should be repairing damage. When this happens to a child and you watch them decline mentally at an age when they should be advancing, it can be heart-breaking. That is why I chose to highlight a paper in which injected neural stem cells were able to repair radiation damage in rats and bring back their sensory abilities towards normal. (You can read our blog entry on this research here.)

This month’s literature continued to show progress in using stem cells to reproduce complex tissues made of multiple cell types, something that has always been a touchstone goal for regenerative medicine. One research team was able to grow functional small intestine on a biodegradable scaffold in mice (which we blog about here). Another was able to produce mucus glands with both the inner and outer structures that make up a normal gland (blogged about here).

With heart disease being a leading cause of disability it was good to see advances in heart tissue repair this month from two very different angles. One research team developed a much more efficient way to drive embryonic stem cells to become heart muscle cells, which is the type of cell needed to repair tissue damaged or weakened from a heart attack or congestive heart failure. The other team discovered a compound that can be injected like a drug and that can activate the few adult heart stem cells we all have to be better at repairing tissue (here's our blog about that work).

I hope you find the somewhat longer descriptions in my full report interesting.

Improved technique for directly converting skin to neurons

This is the way things often go in science: One group announces a breakthrough. Yah! Then for the next several years, scientists all over the world replicate and improve on that breakthrough until it's finally believable and widely useful.

To people outside science who read about the initial breakthrough, this may look a lot like scientists twiddling their thumbs, sitting on new therapies. But really, do you want a therapy based on a breakthrough that may or may not be real? Right, neither do I.

A paper from Marius Wernig's lab at Stanford University is a great example of this process. In January, 2010, Wernig's lab had a paper in Nature announcing their transformation of mouse skin cells directly into neurons. This was exciting work, bringing with it the possibility of directly converting skin from a person with a neuronal disease into neurons that can be studied in the lab. But that work was in mice, and one thing we know from past research is that mice are most certainly not humans.

About a year and a half later, Wernig replicated his work with human cells in another Nature paper, but the transformation was much less efficient than it was with mouse cells (here's our blog entry on that work). It took weeks for the transformation to take place, only 2 to 4 percent of the skin cells transformed into neurons and those neuronal cells were on the wimpy side. It's still exciting work — I mean how cool is it that human skin can be turned into neurons with the addition of just four molecules. But ready for therapeutic prime time? I think not.

Now we've entered the next stage where scientists all over the world incrementally improve upon the original work until it's good enough, fast enough and efficient enough to be broadly useful. One such improvement came from the Stanford University lab of Gerald Crabtree, who published his findings in a Nature paper last week.

Crabtree's lab employed two of the four factors that had been effective for Wernig, but supplemented those with a different kind of molecule — called microRNAs. This change dramatically improved how efficiently the skin cells converted to neurons, and produced neurons with much stronger electrical signaling. Another group from Milan published a paper in early July using three different factors to coerce the transformation from skin to neuron. In their case, the neurons were more like those that are lost in Parkinson's disease, known as dopaminergic neurons.

A Stanford press release quotes Crabtree:

“It’s been a long time in coming to this,” said Crabtree. “But science often progresses in leaps and starts, and then all of a sudden many scientists come to the same position at the same time. Now these studies have come out, and more will be coming, all of which are going to say that not only can you can make neurons different ways, but also you can make neurons of different types.”

At this point it's too soon to know which, if any, of these techniques is going to become most widely used. We can probably expect to see more improvements on these approaches coming out of some labs, while other labs start figuring out how this revolutionary transformation can be used to treat or understand disease. Crabtree's lab, for example, says they are already taking skin cells from people with Down's syndrome and transforming those into neurons in order to understand the disease and look for therapies.

A.A.

CIRM HIV/AIDS disease team technology makes news

Richmond-based Sangamo BioSciences has been making a lot of news lately with their gene editing technology. Theirs is the technique being used in CIRM'S HIV Disease Team Award to John Zaia at The City of Hope (summarized in this San Francisco Business Journal story).

Sangamo's so-called zinc finger technology can recognize a specific location in the DNA, snip it out, and replace it with a different sequence. In the case of HIV, the molecular zinc scissors are being used to create a mutation in a small region of DNA in blood-forming stem cells.

Those cells altered in the lab lack a working copy of the protein CCR5, which the HIV virus uses to enter and destroy immune cells. The team then plans to transplant those altered stem cells into a person, where they create a new immune system that is resistant to HIV infection. Early results from this work in animals look promising and the team is hoping to be able to enter human clinical trials with the technique in the next few years.

This is one of two CIRM disease teams attempting to generate a stem cell-based therapy for HIV/AIDS. The other award, to Irvin Chen at UCLA, is using a different type of molecule to mutate the CCR5.

Ron Leuty of the San Francisco Business Journal had a story yesterday about Sangamo's prospects, which include a trial to treat pain associated with diabetes, called diabetic neuropathy. The technique is also being used in research to treat the blood-clotting disease hemophilia B and to create disease-in-a-dish models of heart disease. Reuty wrote about the heart disease work, being carried out by Sangamo and researchers at the Scripps Translational Science Institute:

Using induced pluripotent stem cells — adult stem cells manipulated to give them embryonic-like qualities — researchers will recreate cells that line the arteries. ...

"Genome editing allows us to do an experiment no one has ever tried — that is, if you change someone's genetics, can you make their cells revert away from acquiring a disease?" Samuel Levy, director of genomic sciences at the Scripps Translational Science Institute, said in a press release.

This video describes how the City of Hope team hopes to use the zinc finger technology in their proposed therapy for HIV.



You can also watch talks by City of Hope research John Zaia, CIRM board member and HIV patient advocate Jeff Sheehy, and HIV advocate Loren Leeds when they spoke to the CIRM governing board about the work.

-A.A.

Stem cells improve brain function after radiation therapy

CIRM grantees at University of California Irvine have used human neural stem cells to help alleviate brain damage that occurs after radiation to treat brain tumors.

Radiation can be an effective way of treating tumors in the brain, but the radiation also kills surrounding healthy tissue in addition to the destroying the tumor. Even if the cancer is eliminated the person can be left with debilitating learning and memory loss. A press release from UCI quotes senior author on the work Charles Limoli, who has a CIRM SEED award to carry out this work:

“In almost every instance, people experience severe cognitive impairment that’s progressive and debilitating,” Limoli said. “Pediatric cancer patients can experience a drop of up to three IQ points per year.”

Limoli and his team wanted to know if the brain's stem cells could repair that damage. They injected human neural stem cells into the brains of rats that had undergone radiation treatment. Those stem cells migrated to the damaged part of the brain and matured into nerves and the brain's support cells. The release quotes Limoli:

“This research suggests that stem cell therapies may one day be implemented in the clinic to provide relief to patients suffering from cognitive impairments incurred as a result of their cancer treatments,” Limoli said. “While much work remains, a clinical trial analyzing the safety of such approaches may be possible within a few years, most likely with patients afflicted with glioblastoma multiforme, a particularly aggressive and deadly form of brain cancer.”

If their work is successful, this technique could help people live normal lives after being treated for brain cancers. That would be good news for individuals, their caregivers and for the state, which loses tax income when people are unable to work or must decrease work to care for family members.

Cancer Research, July 15, 2011
CIRM Funding: Charles Limoli (RS1-00413-1)

A.A.

Whole teeth grown from molar stem cells in mice

Researchers in Japan have grown functional teeth using cells taken from a mouse molar as starting material. The group grew these cells for a few days in the lab, then placed them into a tooth-shaped mold and implanted the mold into the mouse kidney where they were left to grow for about two months.

What the group found after that time looked like a tooth, had the normal structures of a tooth and was able to implant normally into the jaw of a mouse. The mouse was able to chew normally using the engineered tooth.

The work was published on July 12 in the journal PLoS ONE. In a Reuters story about the work,Takashi Tsuji, who led the research, said two things are needed before dentists can replace artificial bridges with teeth that implant and function just like the original set. One is learning how to grow the teeth in a lab rather than inside the kidney.

The other is finding the human equivalent of the cells they took from mouse molars. Molars contain a lot of cells, only some of which have the ability to create entire new teeth under the right conditions. In the Reuters story Tsuji said:

"In this case, entire tooth units could be grown because the stem cells were taken from molar teeth of mice -- where they later grew into enamel, dental bones and other parts that comprised a regular tooth unit."

As is often the case in medical research, translating discoveries from mice or rats to humans can be slow going. However, if the scientists are able to find the right cells and work out conditions to grow those cells in the lab, in could mean a future of easier chewing for older people.

A.A.

First fully synthetic windpipe saves a life without risk of rejection

It was a small step for science, but a big step for mankind — one man in particular. A man in Sweden recently received a new trachea (windpipe) made from synthetic material seeded with cells from the patient's bone marrow. (The last shuttle launch on Friday has brought on aerospace wordplay.)

The big step for mankind is this: The transplant is being billed as the first fully artificial permanent organ. A similar technique by the same Swedish team back in 2008 seeded the cartilage frame of a donated trachea with a patient's own cells. That technique still relied on a donated organ. In the recent transplant, the cells were grown on a fully synthetic structure. In both cases, because the patient's cells are used to generate the tissue there's no need for long-term immune-suppressing drugs to prevent rejection.

Despite the big first for the individual man, George Daley, director of stem cell transplantation at Children's Hospital Boston, says in a USA Today story that it's actually incremental science. He's quoted as saying:

"The scientific advance is pretty minimal," he says. "Tissue engineers have been marrying cells to matrices to regrow parts for many years."

One take-away from this announcement is that a lot of incremental steps are required for every groundbreaking advance. We spend a lot of time in this blog writing about those papers that move research incrementally forward. Last week's piece on bioengineered intestines is one example of that. This recent transplant is a reminder of where all those small steps are taking us.

A.A.

CIRM Bridges to stem cell research students talk science and careers

Today CIRM's Bridges to Stem Cell Research students are meeting and greeting some of the state's most notable stem cell scientists at their annual meeting in Burlingame, CA. For many of these undergraduate and masters-level students, it's a opportunity they would never have had without CIRM's Bridges internship program.

First established in 2009, the Bridges programs fund students at community colleges and California State schools to take stem cell classes and do internship projects in established stem cell research labs in industry or at University of California and other major university campuses. (This map shows the Bridges to Stem Cell Research programs in purple.) Given the expense of working with stem cells, students at these schools would likely never have had a chance to participate in this cutting edge research. And without that experience, these students would likely be shut out of careers in California's growing stem cell industry.

Most of CIRM's funding goes to people who either already have their M.D.s, Ph.D.s, or are well on their way down that path. What's exciting to me about the Bridges program is that it reaches beyond the pool of people who would already have had careers in science — though perhaps not in stem cell science. The Bridges students I met while filming a video about the program were the first people in their families to go to college, or the first to even consider academic careers.

Here's that video:


What we hear back from the directors of the programs is that many students are going on to get higher degrees, and others are being hired by the labs where they did internships. Given the competition for those jobs, that's quite a compliment to the quality of the students.

We'll be taking photos and shooting more footage for another video about the Bridges program today. Stay tuned for that video, and for more information about the work these students are doing. If there's any specific information you want about the program or those students ask it here and we'll get answers today at the meeting.

A.A.

Tissue engineering produces small intestine, possible help for pre-term infants

CIRM grantees at Children's Hospital Los Angeles and the University of Southern California have succeeded in growing normal-looking small intestines in mice.

In a press release, the senior author Tracy Grikscheit said:

“The small intestine is an exquisitely regenerative organ.  The cells are constantly being lost and replaced over the course of our entire lives," she explained. "Why not harness that regenerative capacity to benefit these children?”

The group took a small sample of small intestine from mice and placed them on a biodegradable scaffolding inside the abdomen of another mouse. That scaffolding basically gave the cells something to grow on that would mimic the shape of a normal intestine. What they found is that the transplanted cells were able to form all the cell types and structures that are normally part of the small intestine.

The paper was published in the July issue of Tissue Engineering.

The press release mentions the eventual hope of using the technique to help children with intestinal failure. Babies born pre-term are at risk for intestinal damage called necrotizing enterocolitis (NEC), which occurs when the intestine is injured.

Tissue Engineering, July 2011
CIRM Funding: Tracy Grikscheit (RN2-00946), Frederic Sala (TG2-01168)

A welcome voice in stem cell communication - a new podcast launches

CIRM grantee Paul Knoepfler at UC Davis has been blogging about stem cell science for a while now. He recently expanded his outreach to include a regular podcast. It's worth checking out. He's listing the most recent podcast at the top of his main blog page: http://www.ipscell.com/ .

Knoepfler includes some science, some policy, and a nice comment on the value of CIRM's funding in advancing stem cell science. As he admits, he's not exactly unbiased. He has a New Faculty II award from CIRM and is at an institution with a shared lab and major facility funded in part by CIRM. Still, we think he's right when he says:

"In a state where there s so much going wrong Californian's should be proud of their foresight in creating CIRM and in all that CIRM has already accomplished. CIRM is one of the things in ca that is actually going really well and we should be happy about it."

There are a few groups competing for the public's attention on stem cell topics. Those opposed to stem cell science have a few blogs, which they promote heavily. These generally tout advances with adult stem cells. Many of those advances are very hopeful, and we tout them too, but telling one side of the story doesn't ever give a complete picture of the field.

Several organizations such as CIRM, the Canadian Stem Cell Network and the Australian Stem Cell Centre also have blogs that promote stem cell science and attempt to put recent scientific advances into context. However, to my knowledge Knoepfler is the only stem cell scientist attempting to reach the public online. I look forward to hearing more podcasts from Knoepfler, and wish him much success in providing accurate information about stem cell research at a time when it is so clearly needed.

A.A.

Happy Birthday! Dolly the first cloned mammal turns 15

In February 1997, a friend and fellow science writer had been assigned to write a story about why mammals were unlikely to ever be cloned. A few days later that assignment changed with the February 22, 1997 announcement of Dolly the sheep — the first cloned mammal.

Although the announcement from the Roslin Institute in Scotland came in February, Dolly's actual birthday was 15 years ago today, July 5. According to Wikipedia, there are now 19 species of mammals that have been cloned, including — this one came as a surprise to me — water buffalo. The Roslin has posted a timeline of Dolly's life.

Cloning animals such as horses, cattle and pigs is now seen as a valuable way of propagating valuable livestock, and cloning endangered animals could help prevent their extinction.

The critical first step in animal cloning is to inject the nucleus of a cell from an adult animal into an egg that has had the DNA from its nucleus removed. The first step is called "somatic cell nuclear transfer" or SCNT. (The nucleus is the core of any cell and contains all the DNA.) In the lab, scientists stimulate the resulting egg to divide and begin forming an embryo.

Here is where reproductive cloning and stem cell research diverge. In reproductive cloning, that several day old embryo is placed in the womb of an animal and allowed to mature normally. In stem cell research, the cells of that several day old embryo are removed and used to generate animal embryonic stem cell lines.

I say animal lines because to date this process has not been reproduced using human DNA. All human embryonic stem cell lines come from embryos left over after in vitro fertilization.

The birth of Dolly sparked a national dialogue about the possibility of human reproductive cloning. In California, the legislature declared a five-year moratorium on any attempt at human reproductive cloning (SB 1344), and the California State Advisory Committee on Human Cloning was convened. This Committee strongly recommended against allowing any human reproductive cloning, as did the National Academies of Science, the International Society for Stem Cell Research and other state, federal and international agencies.

California is now one of a handful of states (listed here) with laws expressly prohibiting human reproductive cloning, and CIRM regulations also prohibit human reproductive cloning with our funds. As of yet, there is no federal law making human reproductive cloning illegal.

Even though all scientific organization that have weighed in on the topic strongly encourage laws against human reproductive cloning, those opposed to stem cell research still raise the specter of stem cell scientists trying to create new humans. In Minnesota right now there is proposed legislation that would ban both reproductive cloning and that first step, SCNT, which could lead to new stem cell lines. Scientists in Minnesota have argued that such legislation could slow the entire field of stem cell research in the state.

CIRM has funded three awards to scientists who are hoping to generate new stem cell lines through SCNT — the step in which an adult nucleus is placed in an egg. Here's a list of those awards. Renee Reijo Pera, who is one of those grantees, has argued that the technique would allow scientists to better understand the critical first few days of development, in which she says some diseases and birth defects originate.

Dolly died in February 2003 due to an infection, six years after the announcement of her existence shook up the scientific community and began a dialogue about human reproductive cloning that has yet to end. Hopefully by her 20th birthday we'll see a federal ban on human reproductive cloning that will put the conversation to rest.

A.A.

Listening to the voice of the patient advocates

Guest blog by Lorraine and Chris Stiehl, CIRM Advocacy Coordinators

For those of you who follow this CIRM Blog on a regular basis, you must feel as excited as we are that progress in stem cell research is progressing at a rapid rate. We feel privileged that we are helping to coordinate the patient advocate effort for CIRM – ensuring that patient advocates across the state are “educated, excited and empowered” about stem cell research.

One of our tasks when we joined CIRM as its Patient Advocate Coordinators was to develop an understanding of what Patient Advocates and Voluntary Health Agencies wish to receive from CIRM regarding stem cell research – the “Voice of the Stem Cell Advocate.”

We began our “listening tour” by interviewing both Patient Advocates and Voluntary Health Agency Executives throughout the state -- from Redding to Chula Vista and from the coastline to the Central Valley. Thus far, we have interviewed approximately 70 individuals and attended over 20 disease group meetings -- asking everyone for their “wants” and “needs” from CIRM: What information would they like to receive regarding stem cell research? What can CIRM do to promote and encourage their advocacy?

Our primary focus was on listening -- listening to their hopes, pains, frustrations and questions. We used the information from these interviews to describe the ideal patient advocate effort – all captured in the patient advocates’s own words. We then asked groups of advocates to organize the needs we obtained into broad categories. Through this proven, well-documented qualitative process, we created a document that includes all of the advocate wants and needs -- in their words -- as organized by them. We will share all of these categories with you in upcoming blogs. In this blog, we are focusing on the broad category of “Research.”

In every interview we conducted, patients, their families and caregivers, and voluntary health agency executives were hungry for more information on CIRM-sponsored research. They wish to know the goals of the research, especially research aimed at their specific disease or affliction (CIRM has disease-specific information about stem cell funding here). These advocates also hope to learn more about the clinical applications of this research -- as well as how they might participate in upcoming clinical trials.

CIRM has many outreach efforts underway to educate advocates on stem cell research. For example, in recent months CIRM has sponsored “Patient Advocacy Days” at several venues across the state. Each of these meetings was focused on a specific disease or related diseases, as had been requested through the “Voice of the Stem Cell Advocate.” On May 7th, Leeza Gibbons of CIRM’s ICOC Governing Board headlined a standing-room only event at UC Irvine’s Sue and Bill Gross Stem Cell Research Center. That event focused on Huntington’s, Parkinson’s and Alzheimer’s diseases. On May 21st, Marcy Feit of the ICOC gave the keynote presentation to a capacity crowd at the Stockton Hilton. Three researchers from UC Davis and UC Merced presented on stem cell research and inflammation, a common component in heart disease and autoimmune disease. At both of these programs, the interaction between the researchers and the patient advocates was very positive and deeply motivating for all parties involved. Expect to see many more of these programs scheduled for this fall/winter.

Also, as we have traveled throughout the state presenting to voluntary health agency meetings, we have seen first-hand how the link between CIRM and the patient community is being strengthened. Through patient advocate interaction, CIRM has significantly increased the number of visits to their website – adding more subscribers to the CIRM newsletter and blog (you can sign up to receive the CIRM monthly digest or press releases here). Additionally, CIRM has authored newsletter articles for agencies, as well as provided speakers and funding for a number of voluntary health agency stem cell educational events.

As Patient Advocate Coordinators for CIRM, we look forward to continuing to work with patient advocates throughout the state to support all diseases that demand a cell-based solution such as those found in stem cell research. Please keep in touch with us!

lorstiehl@stiehlworks.com
chris@stiehlworks.com
http://www.stiehlworks.com/CIRMStiehlWorks-PatientAdvocacy.htm