Each year in our Annual Report we highlight some of the patients and scientists who came to speak to our governing board about the search for cures. This year one of our stories focuses on a rare disease called neuromyelitis optica, also known as NMO or Devic’s disease. You can read that story here.
Neuromyelitis optica is so rare that when Ali Guthy was diagnosed her mother Victoria Jackson could only find one expert in the U.S. to treat her daughter. Jackson, who was the creator of Victoria Jackson Cosmetics, quickly started the Guthy-Jackson Charitable Foundation and began funding researchers to work together to better understand and hopefully find a therapy for the disease. CIRM chose to highlight Jackson and NMO because it provides such a vivid example of what dedicated patient advocacy can accomplish.
Last year CIRM produced a video about Jackson’s efforts to start the foundation and turn her life’s focus, as she says, from “mascara to medicine.”
Like multiple sclerosis, NMO is a disease in which the body’s immune system attacks the insulation that surrounds nerves. Michael Yeaman, who studies the disease at UCLA, told the governing board that until recently the only way of slowing the disease was through sterioids, which he said leaves patients vulnerable to other infections and can increase the risk of cancer. He said:
“Ultimately, reversing the damage caused by NMO or other autoimmune diseases will require regenerative medicines, and stem cells will play a key role in that respect. To restore the central nervous system, we're going to need regenerative help.”
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A.A.
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