Welcome to the blog of the Association of Ocular
Apraxia and Related Diseases, just created in 2015.
Our association has been born after several
years of blogging. In my blog I have been telling you about my son Arnau’s illness,
Ocular Apraxia, and the subsequent suspicion of Joubert syndrome (because Arnau’s
brain shows a molar sign). In this time I have lived many different
experiences, some of them sad, but many others full of happiness, hope and
expectation.
Why an association, then? Because there wasn’t any
similar association here and, while the blog is more personal, I found I wanted
to include a social aspect in my task and reach as many people as wished to be
reached.
Ocular Apraxia is a neurological pathology, and
the less known of all apraxias. Sometimes, it goes together with hypotonia,
talk delay and others signs and symptoms which give specific traits to people
who suffer it.
But if you are here, it is probably because you,
or someone close to you, suffer from this kind of apraxia and/or some other related
disease, such as Joubert syndrome or ataxia. We’ll talk about all this, and
also about therapies and medical research. We hope to create a place open to
everybody, even if only to chat for a while.
The truth is when I decided to create this
association I had many fears. But they soon disappeared when a lot of wonderful
people, both friends and professionals, said they would help me without
hesitation the moment I asked them. Therefore, we will count with the opinion
of experts on a number of subjects which you will be able to read on the web
once it is fully working.
On the other hand, we’d like to give voice to this
social concern both on a local and a global scale since this association is
created, obviously, from a comfortable western perspective. This is why, in due
time, one of our missions will be to cooperate with other organizations dealing
with people suffering from apraxia who may also be in risk of social exclusion.
Remember that our website is currently under
construction and that we’ll keep you posted the moment it is ready. For now,
you can check our blog for regular information here.
By the way, we still don’t take members, except
for some special cases. Our Statutes will also be available as soon as our
website is working.
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