Stem Cell Person of the Year 2016: Patient Advocate Ted Harada

Stem cell ethics meeting

Ted, Me, and Judy

Patient advocate Ted Harada is the recipient of this year’s Stem Cell Person of the Year Award.

Congrats also to the runner-up, HD patient advocate Judy Roberson. The three of us together are pictured at left.

You can read about the 20 nominees here and see the vote results that picked the 10 finalists here.

Very sadly, as many of you know, Ted passed away just a few months ago from a brain tumor so I am giving him this award posthumously. Accepting the award on his behalf is his wife Michelle.  Ted and I shared a deep commitment to our families. You can see a picture of Ted, Michelle, and their kids below. What a great family!

You can see a video of Ted talking about Right To Try below.

Each year that I’ve done the Stem Cell Person of the Year Award, I’ve been faced with the wonderful, but difficult challenge of picking one winner out of a group of outstanding finalists and this year was no different.

With this award that includes a $2,000 prize, I’m looking for an outside-the-box risk taker who has made a positive impact in the world of stem cells. Ted fit the bill perfectly. Ted Harada Family

Ted was a clinical trial participant for a new stem cell therapy for ALS in a trial run by the biotech Neuralstem. As such, Ted put himself at risk (transplanted cells have risks, immunosuppression has risks, etc.). He did this for the benefit of the field and for other patients. However, Ted went well beyond that. He was also a tireless patient advocate and educator who inspired countless people.

Ted respected other’s opinions and was a true class act. For instance, although Ted and I didn’t see entirely eye-to-eye on some things like Right to Try, that wasn’t a wedge. He served as a bridge between different parts of the community. Here at UC Davis we run an annual symposium on stem cell ethics and one year Ted was an invited speaker. He made a big, positive impact at our meeting.

Overall, Ted left the world including the stem cell and regenerative medicine arena a far better place. You can read my tribute to Ted after his death here. I only wish I could have given him this award in person.

10 finalists for Stem Cell Person of the Year 2016

scpoy-2016-finalistsThe voting on the 20 nominees for Stem Cell Person of the Year finished at midnight last night.

After more than 1,000 votes, we have the top 10 finalists.

These ten are some of the most remarkable people in the world of stem cells today. They have all had great impact, but in very diverse ways.

They run the spectrum from patient advocates to the President of CIRM to a host of top stem cell researchers. Patient advocates Ted Harada and Judy Roberson have the top two spots in terms of votes.

Now I have the tough task of picking just one winner as the Stem Cell Person of the Year. The awardee wins international recognition as the top outside the box thinker and positive impactor of the year and a $2,000 prize. You can read more about all the 20 people who were nominated here.

Vote now for your pick for Stem Cell Person of the Year 2016

Vote on your pick for the top stem cell outside the box thinker and positive impactor in 2016 from the 20 choices below. The top 10 vote getters will be finalists from which I will have the tough task of picking the one winner as Stem Cell Person of the Year along with the $2,000 prize and recognition.

You can vote once per day. The voting closes in 10 days on December 15th at 11:59pm Pacific Time. Read more about the 20 nominees here.

20 Nominees for Stem Cell Person of the Year 2016 Award

stem-cell-person-of-the-year-awardI received a score of great nominations for the Stem Cell Person of the Year 2016 Award and have briefly described the twenty nominees below. The point of the award is to honor the top positive stem cell leader who specifically thinks outside the box and takes risks.

I’ve started an on-line vote where you can vote once per day for your favorite nominee(s) for Stem Cell Person of the Year. The top half or so of nominees getting the most votes will be the finalists from which I will choose the final winner, who receives the $2,000 prize and international recognition as a global leader in the stem cell and regenerative medicine field.

Past winners of the Stem Cell Person of the Year Award include the following:

  • Top stem cell scientist Jeanne Loring in 2015.
  • Pioneering vision and pluripotent stem cell clinical researcher, Masayo Takahashi in 2014.
  • Neural stem cell scientist and very effective Italian politician Elena Cattaneo in 2013.
  • Stem cell patient advocate Roman Reed in 2012.

Here are the 2016 nominees in alphabetical order by first name with some description of who they are and a bit of the words from the person(s) who nominated them in some cases. Where I could find a link to websites describing their accomplishments, I have provided those.

Amy Wagers, Professor at Harvard. She has a long track record of cutting edge research on stem cells including recently very provocative work on the role of stem cells in human aging and approaches to reversing aging.

Arnold Caplan, Professor at Case Western Reserve. He is often considered the “father” of the mesenchymal stem/stromal cell (medicinal signaling cell) field and has done important research on MSCs over many years.

Connie Eaves, Distinguished Investigator at Terry Fox Laboratory at UBC. She has a remarkable track record of innovative research on stem cells including both normal and cancer stem cells and a reputation as a fantastic mentor and leader in the field more generally. “Brilliant scientist with unmatched piercing view of science”.

Hiroshi Nagashima, Professor at Meiji University, Tokyo. “A true translational scientist (with a wicked sense of humor!)” He works in part on cloning technology and could revolutionize organ transplantation approaches leading to huge impact.

Jim Gass. Jim is a patient who suffered a stroke and then sought stem cell treatments to try to reverse some of the damage. Somewhere along the lines, one or more of the unproven stem cell therapies he received caused him to develop a spinal tumor. He had the courage to go public with his story and describe his experiences, potentially risking litigation. “A gutsy man who has prevented others from getting injured.”

John Pimanda, Associate Professor of Medicine and Stem Cell Biology, UNSW Australia. He researches transcriptional regulation of adult stem cells and now the use of fat stem cells for spine injury.

Judy Roberson. She is a tireless Huntington’s Disease (HD) advocate, always working to make a positive difference. “She is a straight shooter who will tell you what she thinks and work to make it a reality.”

Jun Takahashi. He is a Professor at CiRA and pluripotent stem cell biology researcher. Jun has done pioneering IPSC research and is working to start a very exciting Parkinson’s Disease clinical trial using IPSC in Japan.

Margaret Goodell, Professor at Baylor College of Medicine. She is an internationally respected scholar in the stem cell field. She conducts cool, innovative research on transcriptional and epigenetic regulation of hematopoietic stem cells and how this goes awry in leukemias.

Mike West. Often mentioned as one of the founders of the regenerative medicine field, he is the leader of BioTime and is a thought leader in the field. “Mike knows all about taking risks in regenerative medicine leading to big, positive leaps forward.”

Nissim Benvenisty, Professor of Genetics at the Hebrew University of Jerusalem. He is a super-prolific, long-time stem cell researcher. His latest work this year was on revolutionary production of haploid ES cells.

Oliver Brustle, Professor and Director of the Institute of Reconstructive Neurobiology and Professor of Reconstructive Neurobiology at the University of Bonn Medical Center. He conducts innovative neural stem cell research and is a globally respected stem cell leader.

Randy Mills, President and CEO of CIRM. He has been a leader in stem cell biotech for years and has shaken things up at the helm of CIRM with a much more translational emphasis. “Randy has CIRM on track to meaningful clinical outcomes in a way that I cannot imagine another leader could have achieved. The outcome will change the world.”

Richard Ambinder, Johns Hopkins Hospital. Professor Ambinder has done pioneering work in the area of stem cells and viruses, including HIV, as well as stem cells for patients with hematopoietic malignancies. A scientist with a prodigious publication record of high-impact papers.

Robert Lanza. He has been a regenerative medicine leader for, what, decades? Long time scientific leader behind ACT and then its new incarnation as Ocata, which was purchased by Astellas and he leads global regenerative medicine at Astellas.”We expect something new and big from Bob at every turn”.

Sally Temple, Scientific Director, Co-Founder, and Principle Investigator at the Neural Stem Cell Institute. She is also the President of ISSCR. Scholar and innovative researcher in the stem cell field with a focus on stem cells in the brain. Past MacArthur Fellow. “One of the brightest developmental biologists in the world and a natural leader.”

Sheng Ding, Senior Investigator, Gladstone Institute of Cardiovascular Disease. Dr. Ding has done some of the most creative and impactful research in the stem cell field to date, and continues to crank out new discoveries in particular related to chemical reprogramming. He also has co-founded a number of exciting biotechs including Fate Therapeutics. “He has been a positive leader in the stem cell field, and his outside-of-the-box thinking has greatly enhanced our collective efforts to advance the field.”

Shoukhrat Mitalipov, Professor at ONPRC and OHSU. Shoukhrat is a top researcher in the stem and germ cell arenas of research including cloning and mitochondrial transfer, with cutting edge high impact papers published every year. “Fearless and one of the premier innovators in the field”.

Ted Harada (posthumous). Ted was one of the most prominent patients participating in a stem cell clinical trial ever. He fought for patients and efforts such as right to try every step along the way, and brought people together in the field. You can see his obituary and tributes here.

Theresa Liao. Powerful advocate for the use of stem cells to treat recessive dystrophic epidermolysis bullosa (RDEB). Through relentless advocacy she has made a profound difference in this area of clinical research.  “A parent and visionary patient advocate.”

UC Davis CRISPR Meeting Panel: A View from the Trenches on Human Disease

The second session at our CRISPR meeting was really powerful.

As with other posts from the UC Davis CRISPR meeting, since I was taking notes on the fly during this session, this post is a stream of bits from the different talks, often trying to capture the essence of key questions or ideas as the speakers talked so forgive the format.

Overall from this session, the potential future somatic-gene therapy kind of use of CRISPR for catastrophic, fatal diseases such as Huntington’s Disease is something that needs special attention and discussion. More data is needed to know how this will play out.

CRISPR meeting panel

Jacob Corn is a pioneering CRISPR scientist at IGI at Berkeley. I thought it was really cool that he passed a model of CRISPR-Cas9 around for audience. He made the analogy that what we are doing as a field is kind of like driving a car while still working on the car. It was striking when he pointed out the massive increase in publications on CRISPR-Cas9 going from 1 original paper in something like a year to start to now an average of 6 papers per day.CRISPR Model Jacob Corn

Kyle Fink. Kyle is a Huntington’s Disease (HD) researcher here at UC Davis, focusing on genetic approaches to HD including using CRISPR for somatic targeting. He gave an overview of HD and discussed targeting CAG repeats. A team could target the mutant HD DNA, RNA or the toxic protein itself. Targeting DNA could be more effective. Can we truncate the CAG repeats with CRISPR or other similar methods? Or could we silence the expression of the mutant allele specifically. We could use a combo of stem cell and gene therapy. I was impressed by the work he’s doing.

Vicki Wheelock. Dr. Wheelock is a UC Davis physician who cares for HD patients and also conducts research. She provided a very powerful perspective. HD manifests earlier than other neurodevelopmental diseases, typically in 30s and 40s at the peak of life. There are 30,000 cases in the US, but ripple effect affects a lot more people negatively. HD has many, diverse, and often tragic symptoms via the striatum being injured in HD. All treatments are now palliative. Stem cell therapies bring hope for replacement therapy such as MSCs with BDNF (which is taken out by HD). Another example is anti-sense oligo (ASO), which is the basis of a trial via spinal taps in Canada now. But ASO is not specific to mutant HD allele so need data on safety. She highlighted the huge unmet need. I learned something else new about HD in this talk in that HD families went underground during the eugenics movement. There is a stigma, but fortunately that is decreasing. Still a need for other new technologies such as CRISPR.

Judy Roberson. Judy is a wonderful patient advocate for the HD community for over 20 years and has served for 5 years on an FDA advisory panel. She was the first voting HD advocate on that panel. Part of the title of her talk was “HD: The Perfect First Model for CRISPR.” She gave a very moving talk.

She talked about how HD hit her family like a ton of bricks. Her MIL was affected in 30s. Took a long time for diagnosis and died at age 55. She and her husband Tim have 4 children. Tim’s brother Joe died of HD at 52. Judy’s husband was diagnosed at 39 and died in his early 50s. People with HD are often underground and there are worries about genetic discrimination. The stigma remains.

Judy talked about the unique HD program at UC Davis that has more than 500 patients. Some patients move here to be part of the program.

I was impressed with her guts and bluntness. For instance, she criticized the FDA for a number of reasons including lack of listening to patients and their overly conservative approach.

She also had some words for CIRM. “I love CIRM”, she said, but they urgently need some changes including more transparency and more of a role for patient advocates at each step. Judy wrapped up by invoking CRISPR as a “magic scissors” to tackle the mutant HD allele.

The panel also answered questions after they each spoke. For instance, I asked them about the potential use of CRISPR in human embryos to prevent HD.