Brilliant Ataxia Initiatives

I am going to share some awesome thins I saw during the AAC conference. These initiatives are focused around the topic of Ataxia. ASPER BIOGENE Asper Biogene is a genetic testing company focused on diagnostics of hereditary diseases. Our comprehensive testing options vary from single gene analysis to whole genome sequencing. Website: FB: ATAXIA: THE DOCUMENTARY A documentary work-in-progress that follows researchers on a quest to develop therapeutics for Ataxia, capturing the day-to-day experiences – setbacks, realities, and triumphs – of individuals coping with the disease. Website: BIOHAVEN PHARMACEUTICALS Biohaven is a biopharmaceutical company focused on the

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

Annual Ataxia Conference – Day 3

Why is the Conference Exhibit Hall so awesome? The third day was the day of integration. I don’t know if there was any lecture that wasn’t live and with the involvement of participants via chat or camera. During the conference, you can listen to lectures, integrate with other participants, but also watch materials provided by sponsors and other companies and initiatives dealing with ataxia. I am talking about Exhibit Hall. Today I discovered this option and well – I’m delighted. By clicking on the appropriate logos, you can get acquainted with scientific institutes that either find the right medicine or

Annual Ataxia Conference – Day 2

Day two was really great! I don’t have the strength to write everything, but many more scientific as well as ordinary life issues were raised. Finding a cure for ataxia comes down to two approaches – looking for the drug, the substance, and/or helpful genetic therapy that could modify the abnormal genome. Dr. Marie Davis’s speech was extremely interesting because, using wonderful analogies, she explained what the leading trends in genetic therapies are all about. Basically there are three: Antisense oligonucleotides (ASO) Viral (AAV – mediated gene replacement CRISPR Cas 9 Genome Editing I suspect that someday I will write

Annual Ataxia Conference 2021 – Day 1

In the beginning, I would like to emphasize how incredibly happy I am that I can take part in it. I did not assume that I would ever be able to be there. Not only because of the distance, but also finances. Such a trip would be incredibly expensive. Anyway, now I can take part in it and I am glad that it has such an online form. The conference is not only about lectures, but there are also many opportunities to share photos, play happy games or talk to specialists or other ataxians. The first short meeting was a

2021 Annual Ataxia Conference – what to expect

Hello! ^^ On March 10-13, an online conference on ataxia will be held, organized by NAF. I am delighted with this solution – so far the possibility of taking part in this event was unattainable for me. But now? I am already signed up and I am going to comfortably watch the lectures from my home in Poland and I will be happy to share my thoughts with you. NAF organizes its events in a wonderful way – even previous conferences were available to watch online. Not entirely, but the most important speeches were. I remember watching one of the

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