My brother John died this morning. He had suffered tremendously for years with the horrific disease ME (myalgic encephalomyelitis), the same disease that killed our father and grandmother, the same disease that struck me down 11 years ago. With all of his body systems malfunctioning or totally shut down, including his immune system, a simple cold that he caught on Sunday, took him out.
Thankfully, he died peacefully in his sleep in the arms of his heroic wife. John was an incredibly intelligent, interesting, witty, talented, and motivated person. He taught me things and he made me laugh. He had the potential to do great things in the world, but his illness kept him a tortured prisoner in his body.
I don't want condolences, I want to take a sledgehammer to the walls of the NIH and scream WAKE UP! I want NIH to step up to the plate and fund research that matches the disease burden, I want the millions of marginalized people suffering from this horrendous disease to get the support they need from the world of medicine and society at large. I want my family members to stop dying. I want my friends in the community to stop dying. I don't want to die.
In May I spoke about my brother and his daily fight for survival at a MillionsMissing demonstration in San Francisco. I said I was there to fight for his life. We must keep fighting. If you feel inspired to do something in his honor, please make a donation to the Open Medicine Foundation. I love my brother so much. No words can express my deep sadness.
Thankfully, he died peacefully in his sleep in the arms of his heroic wife. John was an incredibly intelligent, interesting, witty, talented, and motivated person. He taught me things and he made me laugh. He had the potential to do great things in the world, but his illness kept him a tortured prisoner in his body.
I don't want condolences, I want to take a sledgehammer to the walls of the NIH and scream WAKE UP! I want NIH to step up to the plate and fund research that matches the disease burden, I want the millions of marginalized people suffering from this horrendous disease to get the support they need from the world of medicine and society at large. I want my family members to stop dying. I want my friends in the community to stop dying. I don't want to die.
In May I spoke about my brother and his daily fight for survival at a MillionsMissing demonstration in San Francisco. I said I was there to fight for his life. We must keep fighting. If you feel inspired to do something in his honor, please make a donation to the Open Medicine Foundation. I love my brother so much. No words can express my deep sadness.