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Jonny Lee Miller and Sanfilippo Syndrome

This topic contains 1 reply, has 2 voices, and was last updated by ScarletSherlock ScarletSherlock 4 years, 5 months ago.

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  • #844
    Le Chat Noir
    Le Chat Noir

    Jonny Lee Miller is an avid marathon athlete, and he’s also rather generous with his time and celebrity. He’s running the Gore-Tex 50 Mile Endurance Challenge at Bear Mountain in New York tomorrow (5/2) to raise money for Jonah’s Just Begun, an organization that raises awareness and funds for research into a cure for Sanfilippo Syndrome. Now, I don’t know about you, but I had absolutely no idea what Sanfilippo Syndrome was, so I thought I’d look it up and share my findings with you. 😀

    It seems that Sanfilippo Syndrome is classified as an MPS disease: “Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes” (source). It’s hereditary, and it’s a degenerative disease, meaning that the symptoms get progressively worse as the patient ages. According to the MPS Society page, “Affected individuals may have mental retardation, cloudy corneas, short stature, stiff joints, incontinence, speech and hearing impairment, chronic runny nose, hernia, heart disease, hyperactivity, depression, pain and a dramatically shortened life span.” In short, it’s rare and it’s horrible.

    Research seems to be making strides, but nothing is ever enough until there’s a cure. As this isn’t a high-profile disease like cancer, it’s not getting nearly the same attention, and thus not getting the same kind of frillions of funding that the big ticket items get. Just an FYI: my mother is a breast cancer survivor, and while I’m beyond grateful for the intense spotlight that shines on it, I also recognize that there are many, many illnesses that don’t enjoy the same high profile status and financial support.

    If you’d like to donate to Miller’s fundraiser (I get the sense that this is an ongoing effort rather than a one-time deal), go here.

    “Oh, you can't help that," said the cat. "We're all mad here.”

  • #851

    Yeah this is ongoing! Jonny is apparently close friends with the family of Jonah, who this was named after (I am actually not sure if he is still alive, sorry to say) and all his charity work goes into this. He’s a good dude.

    "My name is Sherlock Holmes. It is my business to know what other people don't know." BLUE

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