Angelique Prins
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<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Yes I was hoping to find people who joined the FUS trial of Ionis. The idea of this trial (to bring down the toxic production of FUS) is the same as SOD1 so more then great to hear that you are feeling so good by this medicine! </font></font>
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My family had familiar ALS – FUS gene. It is coming from my father’s site and caused allready a lot of sickness and dead :(. My father, 2 sisters and 1 brother died on ALS, so only 1 one sister of him has no symptoms. Some of there clildren also died on ALS allready. After that I descided to test myself and unfortunately I also have the mutation but luckily no symptoms yet. With that information I descided to join research programms in America and Belgium to helping find a cure. (Iam living in the Netherlands) Hopefully it will come soon, I have a lot of faith in the medicin ASO. The rest of my family will not test for the results. I
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Hi Amanda, I think you talk about this great results from a study in America on SOD1 and hopefully after the good results also for the other genes like FUS. https://als.be/nl/Injectie-door-virus-afgeleverde-gen-inactiverende-vector-blokkeert-ALS-degeneratie.
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Hi Amanda
Iam so so sorry to hear that you joint the club. And hopefully you get approval of thr FDA for Tofersen!!
In my family we have the FUS mutation. Me and my brother tested both positive for the gen and sitting in the same position. Hopefully stay on side for a long long time but the expectations are not so good if we look at the family history.
I am praying for the crisper-cas method or the clinical trial ION363.The last trial is already going on in Miami for SOD1 right? (Don’t know what the name is for the sod1 trial) Are you joining that trial also? And did they see a change of biomarkers before it started? On the pre familiar studys we join right now we receive information about possible changes so we can start the ION363 as soon as possible. And then we are more then willing to join, otherwise we die definitely.