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Hello from Greece!
Hello from the very warm right now Athens, Greece!
My name is Kamil, I am 37, originally from Poland, but I was born and live in Greece, where I studied journalism and communication. In 2014, I co-founded i-living, the first and only Independent Living organisation in Greece, and was its chair. Since 2018, I work for the European Network on Independent Living – ENIL as Policy and Movement Support Officer, and, among other things, my role is to support the youth network, work with the membership, and on areas like personal assistance, inclusive education, disability and youth/climate change/hate crime & hate speech/AI & technology, and represent the organisation in conferences and other events. I am experienced speaker, moderator and workshop facilitator when it comes to disability and youth rights, independent living and accessible tourism/travelling. Also, until autumn of 2022 I represented the ENIL Youth Network at the Youth Committee of the European Disability Forum, being the chair of the latter, and I was also in the Youth Committee of the International Disability Alliance. Finally, I am the only disabled travel blogger in Greece (feel free to check @thetrawheeler) and I am part of the team of Care Under Sun, an accessible tourism company in Greece.
The above is also the intro on my LinkedIn profile. I know that I didn’t say much about SMA, as I don’t live a very SMA centered life. But I guess you are curious so I have type 2, take Evrysdi (but I refused to take Spinraza) and I see regularly doctors for the last few years (I didn’t do it before), but on the other hand, I barely understand SMA and just recently started following its developments. I would never call myself “patient” as that’s too medicalised and far from my activistic approach, and I don’t use bi-pap etc (this of course doesn’t mean that I believe that I am necessarily correct and everyone else wrong, and I fully understand how important it is for some of you. I just share my reality). I am a member of the MDA Hellas and I attended the recent general assembly of SMA Europe, so I am slowly getting deeper into the SMA community as I am getting older.
I wanted to join this forum to learn, and also to share my experiences, from a perspective that might be unusual but potentially useful to some people (the SMA community should have all sorts of experiences). My knowledge and experience are mostly about independent living, and accessible travelling, so don’t hesitate to ask me if you have any questions!
Thank you for having me here!
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