• Marlon + Ness replied to the topic RCH-4 in the forum Research Topics 3 years, 3 months ago

    Hi there,

    My wife has been on RCH4 since Feb 2016 and we believe that it has halted her progression. I see there is a bit of interest on the forum here so if you have any questions let me know. My wife’s story is here if you want to read about it https://rch4als.com/our-stories/f/vanessa%E2%80%99s-story

    The reason we think RCH4 is having an affect is because my wife is one of three medically identical triplets. All diagnosed with familiar SOD1 thr114lr varient. Her two sisters have already died and went within 18 months of first symptoms. Their geneticist proclaimed that Vanessa will follow a similar timeline. Vanessa (Ness) is still walking around and functioning nearly normal (just a bit slower and tires easily) nearly 3.5 years later. If anyone wants to talk to us, send a message or ask away about our experience.

    Marlon

    • Hello Marlon & Ness,
      Thank you for sharing your story. I can relate to a great deal of what Ness wrote about in her story. My family also has the mutated SOD1 gene. Again, thank you for sharing. I hope the treatment continues to have positive results!

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