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Snyder-Robinson Syndrome

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Snyder-Robinson Syndrome
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    jeff6227
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    @jeff6227
    March 9, 2021

    Our family live in the Blue Mountains in Australia and today we have just been told today our son has Snyder Robinson Syndrome, need help

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    Story
    the author hugging her child
    the author hugging her child
    Katia Luedtke
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    Snyder-Robinson Syndrome
    March 26, 2019

    Why I'm 'Diving In' for a Cure for Snyder-Robinson Syndrome

    What does a cure for SRS mean? When we talk about “curing” or “finding a treatment for” Snyder-Robinson syndrome (SRS), we mean specifically finding a remedy that will alleviate the medical complexities and symptoms caused by SRS. SRS is caused by a mutation in the SMS gene, which renders the gene unable to do its [...]
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    Story
    Mother and Son walking in the Park . Rear view.
    Mother and Son walking in the Park . Rear view.
    Katia Luedtke
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    Snyder-Robinson Syndrome
    January 19, 2018

    Why I Can Hope for My Child's Treatment After Watching 'Extraordinary Measures'

    I recently watched the movie “Extraordinary Measures,” which is based on a true story about a family desperately searching for a cure for their children’s rare disease. I was riveted by how closely the plot mirrored my experience as a parent of a child with a rare disease. Although the entire movie resonated with me, [...]
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    Story
    Family greeting guest at the door
    Family greeting guest at the door
    Katia Luedtke
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    Snyder-Robinson Syndrome
    October 4, 2016

    How a Stranger Reacted After Learning About My Son's Illness

    A new pest control company came today to give an estimate. My son and I were the only ones home at the time. My son is 8 years old and was born with a rare genetic condition called Snyder-Robinson syndrome. Fewer than 30 people have ever diagnosed with this disease. I usually do not explain [...]
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