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.

4 thoughts on “Tribute to Ted Harada, pioneering stem cell trial participant and ALS advocate”

  1. Ted was a true pioneer.

    Any connection between the therapeutic interventions and glioblastoma? Did Ted remain on immune suppression therapy continuously since receiving the stem cell transplant (could contribute to a tumor’s ability to grow)? That was the intended therapy regimen, though most patients dropped the immune suppression due to side effects.

    The obvious question with a stem Cell therapy, though these were “adult” stem cells and not derived from a pluripotent source material.

    I am sure this will be thoroughly investigated by the Data Safety Monitoring Committee as well as FDA, one of the reasons for developing cell therapies under IND. Should this have happened in another context (unregulated cell therapy administration), it could be easy to blame the therapy for the tumor and not have any data for or against the hypothesis.

    1. @J and Philip,
      It is unclear at this time if there is any link between Ted’s participation in the Neuralstem clinical trial and the glioblastoma. I’m going to write a post on this in the future.

      1. Thanks Paul, look forward to your thoughts.

        I do not personally believe that the treatments (adult stem cell transplant with immune suppression) would have contributed to Ted’s form of cancer (glioblastoma), but thought it a point worth discussion. Any time a stem cell therapy is used, the possibility of an uncontrolled proliferation (i.e. cancer) of the transplanted cells is a theoretical possibility. Given Ted’s central nervous system glioblastoma following intra-central nervous system transplantation of “nervous system stem cells”, possible connections need to be investigated.

        Whether the adjunct therapy (immune suppressing drugs) played a role should be investigated, though these drug combinations have been used for years for anti-rejection of solid organ transplants (kidney, liver, lung…) as well as bone marrow transplants, so relevant data (i.e. how prevalent are other cancers for those people using this immune suppression drug regimen) should be available. Whether an ALS patient’s immune system is different (many experimental ALS therapeutics in development are targeting the immune system; ALS may involve a defective/dysfunctional immune system) is something that does deserve DSMB / FDA investigation.

        What should not be lost is that in this case, under IND with FDA oversight, we will be able to understand theoretically possible contributions (at least have independent review) of stem cell transplant, with associated immune system modulation, to glioblastoma (in this case). In an unregulated environment, we would not have the information necessary to draw conclusions about any possible connections between a stem cell transplant and an adverse event (glioblastoma).

        For the very vocal proponents in favor of unregulated autologous stem cell transplantation for basically any affliction contributing comments to this site, remember that we all have cells that can give rise to cancer (as I believe Ted had for glioblastoma): maybe your transplanted cells, either genetically, due to the manipulation they under go, or the environment they are transplanted into, could undergo a dysregulation of their growth. In Ted’s case the cancer can be tested against the transplanted cells to rule out whether the transplanted cell therapy gave rise to the cancer. In the unregulated autologous transplant environment, not so much: the clinic doesn’t want to know, and doesn’t have the needed information to determine whether a connection exists.

  2. I met Ted at the UCD Ethics symposium. Very impressive guy and a true hero.

    This also supports why our using dogs for stem cell research is essential. They are large sized, long lived, live in the same environment as humans and have many of the same diseases as humans. A tumor from an allogeneic source will be quickly identified by DNA techniques and parentage analysis if one were to occur. It is amazing to me how many grant reviewers are not aware of the benefits.

    I am really sorry to hear about Ted. From my brief encounter with him, it was clear that he was an exceptional guy. Sympathies to the family


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