Tuesday, July 16, 2013

The mafia is wrong – for us it’s not business, it’s personal

Email is an amazing tool. It is fast, it is simple, you can send it from virtually anywhere and it can be used for so many different ways of communicating. But as good as email is, sometimes it’s just no substitute for an old fashioned face-to-face get-together.

That’s why on July 15th we held a meeting at our offices in San Francisco where we brought together patient advocates from all over the Bay Area to meet with the Chair of our governing Board, Jonathan Thomas, our Vice-Chair Sen. Art Torres, some of our science staff and the communications team. The goal was to talk, in person, about the progress being made in stem cell research, to give an update on the work we are funding, and to give the advocates a chance to ask us questions about the work we do, and to get suggestions on how we can do a better job.

Now patient advocates come in many different shapes and sizes. They may be survivors of cancer, they may have friends or family members who have a devastating disease like Alzheimer’s, or they may work for an organization that is trying to raise awareness about a life-threatening condition such as type 1 diabetes. Whatever their motivation or reason they all share a common goal; a desire to find more effective therapies and even cures for some of the biggest health challenges of our time. It was that sense of shared purpose that shaped the conversation we had.

In some ways the specifics of what we talked about – though interesting – were not nearly as important as the fact that we were all gathered in the same room, and that we had a chance to meet in person. As often happens in these circumstances even after the meeting ended the conversations continued, with people talking in pairs or in small groups about the work they do, the concerns they have and their hopes for the future.

Great ideas spring out of those casual encounters, ideas that will help shape the way we work with these individuals and organizations in the years ahead. We intend to hold similar meetings at other cities around the state in the coming months and to make these a regular part of our work.

When we talk about diseases like heart disease or cancer we often preface it by calling it one of the biggest killers in America, and that’s true. But what is more important is to look past the numbers and remember that every heart disease patient is someone’s mother or brother or sister or cousin. That’s why we want to make sure we never lose sight of that fact. What we do is not business. It’s personal.

Kevin McCormack

1 comment:

  1. Gene Therapy’s Time Seems to Have Come
    Years after it was hyped, then vilified after the death of a teenager, then mostly forgotten by the general public, gene therapy has rebounded, and hospitals, companies, and investors in the Boston area have jumpedon the bandwagon. Patients are enrolling in a growing number of clinical trials here, and in some cases showing dramatic improvement. The technique, in which doctors “infect” patients’ cells with viruses engineered to carry useful genes, has matured and evolved.

    Dr. Robert Brown, a professor of neurology at UMass who studies ALS, said that the ability to do more than just add good genes has ignited broader interest in the technique.
    “Many of these diseases have a need for silencing” a gene, Brown said. “In Huntington’s, some forms of Parkinson’s, and most forms of familial ALS, the real challenge is not loss of [gene] function, but how to respond” to mutated genes that are producing proteins that harm the body.
    Animal testing in primates or other large animals set to begin this year are beginning to change the discussion about the potential for using gene therapy in those neurodegenerative diseases.
    “I’ve been doing this for many years starting in the early 1980s, and we’re now at a point where we’re talking about when we would treat the patient,” said Dr. Neil Aronin, a professor of medicine and cell biology at UMass who has long studied Huntington’s. “We didn’t even have that discussion before.”
    http://checkorphan.org/grid/news/treatment/gene-therapy-s-time-seems-to-have-come

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