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.

Tribute to Ted Harada, pioneering stem cell trial participant and ALS advocate

Ted Harada FamilyIt takes a great deal of courage to participate in a clinical trial, patients who make that choice are heroes in my book and one such hero with stem cells was Ted Harada who had ALS. Sadly, Ted passed away from a brain tumor called glioblastoma last month.

When enrolling in a trial, you just never know if it will be beneficial or even be safe, and this is especially true of early phase clinical trials. As a result, it takes guts to be a trial participant and Ted was happy to do so.

I had the honor of meeting and getting to know Ted over the past several years. We even brought Ted out to be a speaker at our annual stem cell ethics symposium here at UC Davis a couple of years back along with my friend and amazing HD advocate Judy Roberson (see pic below of us three).

I first got to know Ted because he was a clinical trial participant in a stem cell study for ALS run by the company Neuralstem. I interviewed him for my blog (two parts here and here) and met up with Ted at meetings.

Ted brought a fresh perspective on the tough question of how to find the sweet spot of regulatory oversight of investigational stem cell therapies. Ted and I didn’t entirely see eye-to-eye on that question, but disagreeing in a mutually respectful way is okay. There is a lot we can learn from each other.  Ted and I agreed on many things too including the importance of patients participating in the dialogue. He was a tireless advocate for ALS research.

Stem cell ethics meeting

Ted, Me, and Judy

I thought of Ted as a friend and I admired him greatly. He will be missed so much. His family meant the world to him. See a picture of Ted that sent me of him with his wonderful family above.

Ted approached all that life threw at him, whether it was ALS or a brain tumor, with a characteristic passion, sense of humor and classiness. I don’t recall anyone dealing with adversity as well as Ted did and I never heard him say anything like, “why me”. Instead there was always kindness and grace.

During his battle with the brain tumor this year, he gave frequent updates on various things he was going through and how he was doing and there was more often than not evidence of Ted’s faith and sometimes his great sense of humor in those updates.

My condolences go out to his family and many friends. We all miss you, Ted. Your extraordinary positive impact continues.

You can read Ted’s obituary and some moving tributes to him here.

Mini-bios on some top finalists for Stem Cell Person of the Year

Heather_MainBy Heather Main

I was a little ashamed of myself that I didn’t know who half of the finalists were in Paul Knoepfler’s Stem Cell Person of the Year Award. I decided to look into it and find out what (or who) I have missed…..Interestingly, 3 of the 7 listed here are not scientists but instead are patients and/or patient advocates, showing the major impact these groups have on progression of our field. I have listed my write-ups of the finalists here alphabetically.

Bill Moss – FSHD sufferer, FSHD global foundation founder and chairman

Bill was diagnosed with FSHD (the most common form of muscular dystrophy) at 28 years old. The youngest child of a gardener, Bill became a masterful businessman and spent 23 years as a senior executive and Executive Director of a pre-eminent Australian investment bank before leaving at 52 years of age to pursue philanthropic initiatives. He has self-funded programs for industry development in Australian aboriginal communities, advocated for disability rights and established the FSHD Global Research Foundation. This foundation funded derivation of the first FSHD affected hESC and successful highthroughput modeling of the disease through development of an efficient protocol to differentiated them to skeletal muscle. 

Jeanne Loring – Academic researcher

Personally I think PluriTest (the bioinformatic test for assessing pluripotent status) alone earns Jeanne a spot in this ‘hall of fame’. Her lab also leads fields including the ‘Frozen Zoo’ (iPSCs from the endangered species), translational projects in arthritis, Alzheimer disease, Parkinson’s disease, autism, and addiction as well as creating collections of iPSC lines for disease modeling and ethnically diverse toxicity testing. Jeanne is also recognized for her public work in ethics, legal issues, clinical use, cell generation and clinical use, the legal implications of patents and stem cell tourism. In December she will be awarded the 2015 World Stem Cell Summit ‘Stem Cell Action Award for advocacy’.

Judy Roberson – Huntington’s Disease patient advocate

Judy is a registered nurse, who now works as a full time volunteer patient advocate for Huntington’s disease. This includes supporting the UC Davis Huntington’s Disease Clinic, the UC Davis Institute for Regenerative Cures, and CIRM (California’s Stem Cell Agency), including legislative advocacy. She was appointed as the first voting patient representative to the FDA Huntington’s Disease Advisory Committee and is past president of the northern California chapter of the Huntington’s Disease Society of America. Judy advocates for the role patient advocates play in driving stem cell sciences towards making the goals a reality.

Michele de Luca and Graziella Pellegrini – academic researchers/clinicians

Professor De Luca, and his principal collaborator Graziella Pellegrini, have worked together over 20 years, towards the use of human epidermal stem cell cultures for life saving burns treatments as well as treatment of repigmentation and piebaldism. The team has also established human limbal stem cell culture for sight restoring corneal regeneration. Michele De Luca is coordinating the first (successful) gene therapy clinical trial for junctional epidermolysis bullosa and studies the stem cell behaviours of epithelial stem cells. Professor Graziella Pellegrini is based at the Centre for Regenerative Medicine “Stefano Ferrari” at the University of Modena and Reggio Emilia and one of the principal scientists on the corneal repair system Holoclar ®.  Together they have achieved Europe’s first approved advanced therapy medicinal product (ATMP) to be integrated into health services for patients across Europe in the future. 

Robert Lanza – ‘child science star’, CSO of Ocata Therapeutics

Reading about Robert Lanza is like reading about a rock star. In TIME magazine’s 2014 100 most influential, in FORTUNE magazine and even suggested to be played by Ben Affleck if his work leads to restoring eyesight to millions. Son of a professional gambler and growing up in Boston, Massachusetts, the weirdest find is that at the age of 14 (1969), he partially induced melanin synthesis in chicken to change the colour of its feathers for a science fair project. While it is hard to find the details of this first study, at the age of 19, with the assistance of Stephen Kuffler and Joshua Sanes at Harvard Medical School, Robert published a complete change in pigmentation in Nature using nucleoprotein from the Harco chicken and a standard cross between the Barred Plymouth Rock hen and the Rhode Island Red rooster. Since this early fascination of genetics, Robert developed methods for deriving hESC lines from single blastomeres in an attempt to avert the ethical discussions of the destruction of human embryos and is now running clinical trials for macular degeneration with hESC derived retinal cells.  Robert is currently Chief Scientific Officer at Ocata Therapeutics (formerly Advanced Cell Technology).

Shoukhrat Mitalipov – academic researcher

Shoukhrat was the first to derive hESC through somatic cell nuclear transfer, publishing in Nature 2013. He is also the ‘father’ of 3-parent IVF where by ‘spindle transfer’ the genetic material of a donor oocyte is swapped out for the DNA of a mother who carries a mitochondrial disorder. This creates a new egg with ‘normal mitochondria’ and nuclear genetic information from the mother, which is then fertilised with the sperm of the father. The technique is successful in rhesus macaques but has not yet been tested in humans. Shoukhrat’s company Mitogenome Therapeutics appears to be pursuing 3-parent IVF in China, because it is not currently allowed by the FDA in the US.

Ted Harada – ALS sufferer and unproven stem cell treatment recipient

Another patient advocate, Ted has received two doses of fetal neural cells in his spinal cord from Emory University in Atlanta as an experimental treatment to slow progression of his ALS. While Ted showed improvement in limb movement, strength and dexterity from the first transplantation his abilities have slowly been regressing, leading to this second treatment. Ted is a strong advocate for “Right To Try” that patients’ choice to receive experimental treatments should be respected and will speed up innovation.  He challenges the idea that patients who are out of options may need to settle for ‘silver standards’ with novel FDA approved treatments taking 10 – 15 years and sometimes nearly a billion dollars. He feels that these patients do not have that time to wait. Refreshingly, he is not a fan of stem cell tourism and the Right-To-Try movement stipulates the treatment has to have completed an FDA phase I portion of a trial and been approved for phase II.

Stem Cell Person of Year Award 2015 Top 12 Finalists

The voters have “spoken” and below is the list of the top 12 vote getters from the larger pool of nominees for Stem Cell Person of the Year in 2015. These are some amazing people.

Look for more information, such as mini-bios, soon on some of the top finalists.

There were nearly 4,700 votes in total.

Now I have the tough task of picking from this dozen just one winner, who will receive the recognition as the top stem cell outside the box innovator of 2015 and of course the $2,000 prize.Stem Cell Person of the Year 2015 Award Nominees