Annual Ataxia Conference – Day 4

On the last day of the conference, the famous „Birds of Feather” event took place. From the very first day all the organizers admired and announced its amazingness. I did not know how it differs from the ‘networking’ panel, except for the target group, because so far we have talked in various randomly selected groups; while BOF was a group of people with SCA1. We are connected not only by this one nasty ATXN1 gene but also by an interest in the same research. And frankly speaking, I was delighted to finally be able to talk to someone experienced in science about my specific problems. Until now, all meetings were moderated and conducted in an atmosphere of friendliness, while the BOF was a scientific and concrete two-way webinar attended by three specialists – Harry Orr, Puneet Opal, and Tetsuo Ashizawa.

Mr. Harry Orr started by mentioning the research on ASO (antisense oligonucleotide) therapy which I am a huge fan of. More attentive people may remember that this therapy is among the therapeutic approaches mentioned in an earlier webinar on current genetic discoveries. Of course, I am going to write more on this, as this method deserves great attention from all ataxians – not just those of SCA1. I took the opportunity to talk a bit with Mr. Harry Orr about the ASO method and how much I believe in it.

I will not mention any other topics, out of respect for the participants and organizers, because Birds of Feathers was a close meeting, something like a therapeutic session, where we could share our doubts and experiences.

Summing up the whole conference – I am happy that I took part in it. I learned a lot of things but also had the opportunity to spend time with people who know so well what I feel. I mentioned once that I have depression. During the conference, many people admitted it and to be honest – it does not surprise me. Living with a diagnosis of ataxia and with ataxia itself is extremely difficult, and it is best understood by those who have it on a daily basis. On the other hand, the sight of so many people involved, still looking for joy and solutions, gives me a great hope that we will be able to get out of this together.

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