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        I post a lot of things about ALS on my social media page. I’m passionate about ALS research and awareness. I volunteer for research study I qualify for and I actively participate and donate to fundraising events.  I guess all of my posts created some confusion to some newer social media friends. They assumed that I already have ALS, and I do not. After clarifying this, I’ve repeatedly been asked “Why did you even find out if you had the mutation?” and “Why volunteer for medical studies if you don’t get paid or benefit in some way?”

        As far as finding out about having the mutation, I wanted to know. I spoke to a genetic counselor several times and I understood the ramifications of knowing. For me, knowing I had the mutation meant I would qualify for more research studies. I think it is important for people to feel passionately about something and to try and do good in this world. For me one cause is definitely finding a cure for ALS and helping raise funds and awareness for ALS! I have a couple of other things I care deeply about as well, but ALS research is something I can volunteer for that most other’s cannot.

        If you have a loved one with familial ALS would you seek out genetic testing to see if you have the same mutation?

        If you are a pALS with a genetic mutation would you want your loved ones to find out if they had the same muation? Would you encourage them to seek out ways to volunteer?

        In what ways have you helped raise awareness? Do you post on your social media accounts? Write a blog?


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