ALS News Today Forums | ADKSue | Activity https://alsnewstoday.com/forums/members/adksue/activity/ Activity feed for ADKSue. Sat, 11 Apr 2026 21:16:39 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 a82487fc9675500c33d33c2e11ddaa2b ADKSue replied to the discussion Are you getting QALSody treatments? in the forum Familial ALS https://alsnewstoday.com/forums/forums/topic/are-you-getting-qalsody-treatments/#post-27110 Sat, 11 Apr 2026 15:51:45 -0500 Reply to Are you getting QALSody treatments?

Although it appears that I am not fALS, I do have the SOD1 gene mutation.

When I was diagnosed in 2018, they did not do genetic testing if there wasn’t a family history. Luckily Synapticure offered free genetic testing and I decided to do it. As soon as the mutation was discovered, I immediately started Qalsody (or should I say Tofersen). I…

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]]> 5988cd6c878782eab43f23544d78daab ADKSue replied to the discussion Tofersen medication in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/tofersen-medication/#post-25171 Tue, 30 Jan 2024 23:22:56 -0600 Reply to Tofersen medication

I started Tofersen in the EAP at Mass General in November of 2022.

I’m slow progressing (diagnosed 3/26/18) so it’s hard to say if it’s working but I have definitely been holding my own since starting.

]]> 4ef928c888f800df5f4c1396a5847653 ADKSue posted a new activity comment https://alsnewstoday.com/forums/activity/p/20675/#acomment-20717 Wed, 18 Oct 2023 01:06:34 -0500 Thank you for the warm welcome! I have been following the topics but just haven’t officially joined the discussions. I do love hearing your responses. You are always a voice of reason and are so knowledgeable.

In reply to - ADKSue became a registered member ]]> 27d5ca73936b5026784f475ff6a8fe95 ADKSue posted a new activity comment https://alsnewstoday.com/forums/activity/p/20675/#acomment-20716 Wed, 18 Oct 2023 01:04:15 -0500 Thank you for the warm welcome! I also have been diagnosed with the SOD1 gene mutation but it doesn’t appear to be familial. I can’t even fathom having others in my family with this horrific disease, let alone multiple members. Thank you for participating in research!

I have been taking Qalsody since last November since I was part of the…

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In reply to - ADKSue became a registered member ]]> 851e4d72d77b8e1bef4528797b833e3f ADKSue became a registered member https://alsnewstoday.com/forums/activity/p/20675/ Fri, 13 Oct 2023 13:47:36 -0500 5