Recent content by Lipreng

  1. L

    Has anyone participated in LEFFTDS?

    Hey Nikki, Thanks for replying :) The 2 day study consists of 2 MRI’s, lots of cognitive testing, blood tests, psych testing, genetic testing, and an optional lumbar puncture.
  2. L

    Has anyone participated in LEFFTDS?

    Hi, I’m traveling to Philadelphia to participate in LEFFTDS in a few weeks. I’m wondering if others could share their experience with this study. I’m interested in hearing what the experience was like..the positives & negatives. I will be getting genetic testing since I will be part of the...
  3. L

    Just found out my birth family suffers from C9 gene mutation. Please help!

    Hi Nikki, thank you for your response. I am absolutely interested in participating in studies, especially the “off the grid” studies you mentioned.
  4. L

    Just found out my birth family suffers from C9 gene mutation. Please help!

    Hi Laurie, thank you for your response. I am now afraid to seek professional help if it can be used against me in the future. I wish to adopt children a few years down the line and worry my medical information could make that impossible. Would it be a safer route if I enrolled in a study?
  5. L

    Just found out my birth family suffers from C9 gene mutation. Please help!

    Hi, I was adopted when I was young and did not know my full medical history. I just discovered that the C9 mutation runs in my family. Over the last 4 years, 3 people have died from this - my uncle and aunt from ALS and my mom from FTD. I am unsure if anyone else is currently affected in my very...
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