Pharyngula

No Jerry, no cure

We’re finally rid of Jerry Lewis and his smarmy, condescending sponsorship of a telethon for muscular dystrophy. I think he meant well, but he had the wrong ideas: this article celebrating his absence makes a significant point. There are many diseases for which there can be no cure short of magically rebuilding entire bodies and brains — that is, no cure short of changing essentially the entirety of who the person is.

All that money was supposed to find what Jerry called “a cure.” Every year he said “We’re closer than ever to a cure.” But every doctor and nurse will tell you the same thing: there is no cure. In the program for the 2011 annual meeting of the Muscular Dystrophy Coordinating Committee, the word “cure” does not appear.

What people with the disability need is help with their symptoms and with mobility. Their quality of life can be improved, their symptoms can be reduced. They also need “accessible public transportation and housing, employment opportunities and other civil rights that a democratic society should ensure for all its citizens.” That’s what Mike Ervin says–he calls himself “a renegade Jerry’s Kid” who was an official telethon poster child in the 1960s.

That’s not a message of hopelessness. To the contrary, it’s saying there are positive improvements that can be made that don’t involve relegating the disabled to the rubbish bin of ‘God’s mistakes’.

(Also on FtB)

Comments

  1. #1 Jon
    September 8, 2011

    Exon skipping with Morpholinos to repair dystrophin is moving along.

    http://www.medscape.com/viewarticle/748862

    New clinical trial
    http://clinicaltrials.gov/ct2/show/NCT01396239

    Completed clinical trials
    http://clinicaltrials.gov/ct2/show/NCT00844597
    http://clinicaltrials.gov/ct2/show/NCT00159250

    Paper on the second completed trial (initial systemic dosing)
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960756-3/abstract#

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