November 2014

“I was a stem cell tourist”; reality check of stem cell treatments; learning at Lorne

Welcome to the National Stem Cell Foundation’s bulletin on stem cell science and news, and our work in supporting stem cell research in Australia.
This month, local and international scientific talent will head to Lorne for the annual scientific meeting of the Australasian Society for Stem Cell Research. This will be a meeting with a difference, they’re joining forces with two other stem cell and cell therapy annual scientific meetings to foster a spirit of collaboration and encourage cross-disciplinary research. We’re once again providing support for young researchers to attend this conference, to help them build their careers in stem cell science. Read on to find out more.

Our recent national tour ‘Stem cells: the potential, the reality and the dangers’ featured visiting American stem cell pioneers Irv Weissman and Ann Tsukamoto and local voices. It was also a great opportunity to connect with people, both inside and outside the research community, hear their concerns and answer some of their questions. Irv and Ann’s visit also attracted media attention. Read on for details.
People were particularly moved by the story of Annie Leverington, who spoke at the Adelaide forum and to media about her experiences of being diagnosed with multiple sclerosis and travelling to Germany for treatment. She showed great courage in sharing her story, with the hope that it will help prevent others falling for similar scams. We thank her deeply for her support, and also for sharing her story in this bulletin.
Finally, we’re delighted to share the news that our two inaugural Metcalf Prize winners, Kaylene Young and Jose Polo, have both been awarded grants in the latest National Health and Medical Research Council funding round. However, we’re also mindful of the low (14.9%) success rate of this grant round, and that many worthy and deserving research proposals have gone unfunded. This strengthens our resolve to play our small part in supporting stem cell research. We look forward to announcing the details of the 2015 Metcalf Prizes for Stem Cell Research in the coming weeks.
Kind regards,
Dr Graeme L Blackman OAM
Chairman, National Stem Cell Foundation of Australia (NSCFA)

In this bulletin:

From junior to senior, from theory to practice: cell researchers converge at Lorne

Three scientific meetings in one to encourage stem cell science and cell therapy collaboration
The Foundation is thrilled to announce that 64 bright young stem cell scientists have been awarded grants to attend Australia’s premier stem cell scientific meeting this month. This year’s theme is ‘Narrowing the gap between stem cell science and cell therapy’, reflecting the decision to hold a special joint meeting of the Australasian Society for Stem Cell Research (ASSCR), Stem Cells Australia and the International Society for Cellular Therapy (Australia and New Zealand region).
Nineteen early-career researchers and 45 PhD students have been awarded conference grants from the Foundation. They will be joining their senior colleagues to hear about the latest advances in cell reprogramming, emerging stem cell technologies, transplantation and immunotherapy research, tissue engineering and regulatory issues.
“The young Foundation grant recipients who came to last year’s scientific meeting brought such energy and enthusiasm to the event,” says ASSCR President Caroline Gargett.
“Building on this year’s theme, we expect we will see a narrowing of the generation gap, as well as narrowing the gap between the lab and the clinic.
“Given the tough times facing the research community in the current financial and political climate, this support by the Foundation for young stem cell scientists has been particularly welcome.”
The quality of applications saw the Foundation extend the grant program by a few extra places. A dedicated session will showcase the research of junior investigators, including presentations from the two PhD students and four early-career researchers whose submitted abstracts received the highest scores. Two awards for top oral presentation will be chosen from these six finalists. The Foundation will also present two top poster awards.
The scientific meeting will be held in Lorne on Victoria’s Great Ocean Road, from 9 to 11 November. It will feature nine international guest speakers and a dozen of Australia's leading stem cell scientists. Our own Dr Christopher Juttner, a physician and chair of the Foundation's scientific and ethics board sub-committee, will give a short presentation at the opening of the meeting.
For more information visit the event website.

Visiting speakers spark a reality check for stem cell treatments

Live events and media interviews challenge the promise and dangers of stem cell therapies 

A meeting of minds during the Weissmanand Tsukamoto
tour: (L to R) Chris Juttner (NSCFA), Jane Visvader
(WEHI), Irv Weissman, Kaylene Young (Metcalf Prize
winner) and Sir Gustav Nossal.

Stem cells are saving lives now—thanks to bone marrow and cord blood transplants—and will save more lives in the future, but there’s a very real risk from unproven treatments. That’s the message from two American stem cell pioneers.
Husband and wife team Irv Weissman and Ann Tsukamoto recently visited Australia for a series of scientific meetings and public forums, discussing both the potential benefits and dangers of stem cell therapies. With expensive experimental treatments on the rise in Australia, their visit also attracted media interest.
Irv discovered human blood-forming stem cells, while Ann is a leader in the commercial development of stem cell medicine, with a particular interest in neural stem cell research. Their perspectives on the fundamentals of stem cell science and how close we really are to viable treatment options provided a much-needed reality check for the public debate around emerging therapies.

You can see some of the media coverage in these clips:

After the speaker tour, ABC’s 7.30 did two follow-up stories on stem cell therapies:
  • ABC 7.30: Questions raised about a clinic offering stem cell treatments using fat from liposuction
  • ABC 7.30: Stem cell treatment for AFL players draws medical and market criticism

"I was a stem cell tourist"

MS patient advocate Annie Leverington tells her story

Still living life to the fullest: Annie Leverington (right)
with her sister at a recent Rolling Stones concert.

Annie Leverington is a former court stenographer who lives in Adelaide with her husband and daughter. She enjoyed her career in the courts and her hobbies, such as flamenco dancing. But the onset of multiple sclerosis set her on a journey that would take her to Germany as a medical tourist. She shares her story and a word of warning.
Diagnosis and the search for answers
Several years ago Annie noticed that one of her left fingers would start to ‘drop’ while she was working on long trials. Then one of her feet started to ‘drop’. However, her MRI scans were clear. Four years after the on-set of symptoms she was finally diagnosed with primary progressive multiple sclerosis, for which there is currently no treatment or cure.
Like many people facing a MS diagnosis, Annie sought information through the internet. She came across the website of XCell-Centre in Germany. It was glossy and appealing, but to Annie's sceptical eye it sounded too good to be true. However, a colleague of her husband returned from the Centre with enthusiastic reports of his treatment there for a different condition, and encouraged her to consider it further. He told a story of seeing a MS patient arrive there with a walking frame, and walk out unassisted after treatment. Annie was put in touch with a couple of other Australian patients who had also received treatment there and recommended the centre, so she arranged treatment, using her own savings.
Treatment in Germany
On the day her treatment commenced, Annie was collected from her hotel at 9 am. Arriving at the hospital, she felt doubtful: there didn't appear to be many people or staff around, it wasn't a typical busy hospital scene and she was left to wait until 4 pm without access to food. However, she felt reassured once she was in the hands of a great nurse. She had a procedure to harvest bone marrow, and then took a taxi back to her hotel.

Two days later the harvested stem cells were fed back into her body via a drip, along with a drug she was told would help the cells cross the blood–brain barrier. After a week in Germany she returned to Australia. She didn't feel any better. She had hoped to feel some improvement, even if only due to the placebo effect.
Back to reality
Back in Australia she discussed the treatment she had had overseas with her neurologist. He sent her to a haematologist who ran tests that turned up no evidence she'd had a stem cell transplant.
The procedure cost her $9,000. With airfare, hotel and other travel expenses, the whole exercise set her back $15,000, which had come from her superannuation savings.
The XCell Centre has since closed under a dark cloud after the death of an 18-month-old boy and the near death of a 10-year-old—both patients.
Meanwhile, Annie is still experiencing slow deterioration, but is keeping as well as she can. She is frustrated that companies like these are preying on the desperation of people in her condition (and much worse). She is also frustrated that mainstream and tabloid media typically focuses on 'miracle cure' stories that raise hope and make people vulnerable.
Annie has words of both caution and hope for people who have been diagnosed with MS.
“There are dodgy dealers out there,” says Annie. “We all need hope, but don’t let your hopes to allow you to be ripped off. Ask questions, do extensive research and talk to your specialists before signing anything.”
“We’re not without options. There are many practical and affordable things we can do to lessen the burden of the disease. Stories and literature about ‘living with MS’—highlighting the importance of diet, exercise and lifestyle—may not be as dramatic as ‘miracle cure’ stories, but they have so much more to offer and at a fraction of the cost.
“If the thousands of dollars currently being spent on medical tourism could instead be channelled into Australian-based clinical trials, the possible cure for everyone could come much sooner.”
See Annie’s ABC 7.30 interview online.

A road map for stem cell journeys - recognised in the 2014 Prime Minister's Prizes for Science

(Left to right) Professor Ryan Lister, 2014 Frank Fenner Prize,Life Scientist of the Year award recipient; The Hon Ian Macfarlane MP, Minister for Industry.

What are the differences between a skin cell and a stem cell? And how do these differences arise? Genes alone don’t fully answer these questions, but another layer of genetic complexity—the epigenome— is at work determining when and where genes are turned on and off.
Professor Ryan Lister from the University of Western Australia is unravelling the complexity of the epigenome. He’s created ways of mapping the millions of molecular markers of where genes have been switched on or off. He’s has made the first maps of these markers in plants and humans, and revealed key differences between the markers in cells with different fates.

Ryan was awarded the 2014 Frank Fenner Prize for Life Scientist of the Year at the Prime Minister’s Prizes for Science awards last week at Parliament House.
His work has already contributed to the understanding of gene regulation and its potential ability to change agriculture and the treatment of disease and mental health.
He’s also explained a challenge for stem cell medicine—showing how when we persuade, for example, skin cells to turn into stem cells, these cells retain a memory of their past. Their epigenome is different to that of natural embryonic stem cells. And he believes this molecular memory could be reversed. He’s working on these ideas with Jose Polo, one of our 2014 Metcalf Prize winners.  Read more about Ryan’s work.

Stem cell news from around the world

Between newsletters, we share stem cell news on social media: Here are a few of the stories we’ve shared recently:
  • Science 2.0: Top 10 takeaways on media-hyped Harvard stem cell diabetes ‘cure’ paper
  • Reuters: BrainStorm gets FDA fast-track status for ALS stem cell therapy
  • Centre for Eye Research Australia: Australia’s unique new stem cell robot gets working on preventing blindness and restoring sight
  • ABC Radio AM: Breast cancer drug hope at Walter and Eliza Hall Institute
  • Wall Street Journal Asia: Korean cloning scandal movie examines patriotic instincts
  • Nature News Blog: End of the road for rogue stem-cell therapy in Italy
  • RIKEN: First human trial of iPSC stem cells has begun: for age-related macular degeneration (information sheet)
  • USC News: Fasting triggers stem cell regeneration of damaged, old immune system
  • The Age/New York Times: Trials and tribulations of stem cell therapy

About the Foundation

The NSCFA is an ATO-registered tax-deductible health promotion charity dedicated to promoting the study and responsible use of stem cells to reduce the burden of disease.
The Foundation’s activities include:

  • supporting research that pursues cures for as-yet-untreatable diseases
  • building a community of people with a shared interest in stem cell science
  • providing the Australian public with objective, reliable information on both the potential and risks of stem cell medicine.
We are working to build a community of people with a stake in stem cell science and to promote collaboration between scientists locally and internationally.
Please feel free to contact the Foundation’s CEO David Zerman on (03) 9524 3166 or email him at


We aim to:

  • Promote the study and use of stem cells

  • Prevent or control diseases or illness

  • Enhance public education about stem cells