Trial in Adult Subjects With Spinocerebellar #Ataxia

The trials seem to be picking up pace and it would be great to reach
the 20/20 vision. Cheers Alan

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Personally, I think it’s good to participate in Clinical Trials. And also, to register with ‘Cords’. Otherwise, how can we justify complaining nothing is being done🤔xB

Beryl, I’ve tried to register but it keeps sending me round in circles ( not a good idea for someone with ataxia)
Can you send a link to the website please? Donna

Hi😊 I originally also got the ‘run around’. Eventually, the penny dropped and I read ‘the small print’.

The patient enrolment system at CoRDS is not compatible via mobile platforms - tablets, phones, iPads etc. I was using my iPad :expressionless:

Luckily I was able to access the system from a laptop. If this doesn’t answer your query, let me know :blush:xB

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Good to see you got it working.

Any problems please shout, as I am in close contact with the CoRDS team.

Like the media say (with the Global) #AlanEveryWhere and #YearOfTheAlan !

As a side me had a good meeting with @psrOrphanExperts in Amsterdam
-update on the patient Advisory board -
Now to practice my talk ready for conference on Wednesday , again still in Amsterdam :+1:

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Thank you Beryl and Alan. I’ll keep trying :smiley:
Donna

Clinical history of stroke is a disqualifier. Dang. I cannot participate. I would think that would eliminate a lot of potential participants.

Hi​:slightly_smiling_face: Research like this often looks for strictly genetic causes. Your ataxia was brought on by a stroke​:thinking: So, a ‘side effect’ if you like, not specifically genetic. But, I since your MRI shows Atrophy and your family history…:thinking:

As it happens, 2 people have contacted me locally, who have both gone on to have ataxia after a stroke. (I run a Support Group). In one family someone already has MS, in the other someone already has Neurological problems. So, does it point to an underlying 'link’:thinking:xB

My brother has A severe ataxic gait. So if I have an ataxic gait which I
am developing amongst other symptoms wouldn’t that point to hereditary
ataxia? My brother and I have both had strokes. Mine in the brainstem, his
in other places. He has never had a drop of alcohol. I have an English
husband who started a brewery.

My brother has A severe ataxic gait. So if I have an ataxic gait which I
am developing amongst other symptoms wouldn’t that point to hereditary
ataxia? My brother and I have both had strokes. Mine in the brainstem, his
in other places. He has never had a drop of alcohol. I have an English
husband who started a brewery.

Beryl_Park http://www.livingwithataxia.org/u/beryl_park
June 3

Hi​[image: :slight_smile:] Research like this often looks for strictly
genetic causes. Your ataxia was brought on by a stroke​[image:
:thinking:] So, a ‘side effect’ if you like, not specifically genetic.

As it happens, 2 people have contacted me locally, who have both gone on
to have ataxia after a stroke. (I run a Support Group). In one family
someone already has MS, in the other someone already has Neurological
problems. So, does it point to an underlying ‘link’[image: :thinking:]xB

Visit Topic
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or reply to this email to respond.

In Reply To
Oreberry http://www.livingwithataxia.org/u/oreberry
June 2
Clinical history of stroke is a disqualifier. Dang. I cannot participate.
I would think that would eliminate a lot of potential participants.

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http://www.livingwithataxia.org/t/trial-in-adult-subjects-with-spinocerebellar-ataxia/5782/9
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My mother had an aneurism behind one of her eyes, it left her with several symptoms very similar to mine, she was never suspected of having ataxia🤔 Her brother had an aneurism which burst during an operation, he died…

Sometimes I wonder if trying to make sense of this condition, is like trying to grasp fog😏

Where does your husband originate from? I live near Newcastle, the home of 'Newcastle Brown Ale’:slightly_smiling_face:xB

I love your analogy Beryl about grasping fog. Did you think of that because it’s very visual and poetic and exactly descriptive. I am sorry about your mom and uncle. We humans are more comfortable, I think, when we have a name (or diagnosis) for everything. Maybe we could call it “Ataxophog.” Or something even better. Like “Whoknowsitis.” Or “Silliwalkophone.”

Newkie Brown, Yeaaa.

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