Here is information on Episodic Ataxia from CINCH (Consortium for the clinical investigations of Channelopathies) from UCLA and the Medical University of Rochester New York. Also Information on Episodic Ataxia from the National Ataxia Foundation. I have been the patient advocate for CINCH for the last several years. CINCH has been involved in the study of three rare disorders including episodic ataxia. Research is being conducted on Episodic Ataxia and currently a few locations are in the process of performing clinical trials.

I have travelled to Los Angeles once and New York twice to give the patient's perspective on Episodic Ataxia. I have translated the information in Spanish. The following is the English information with my Spanish translations.

Translations I have just finished for the National Ataxia Foundation.

English
http://www.ataxia.org/pdf/Episodic%20Updated%202007.pdf

Spanish
http://www.ataxia.org/pdf/Episodic_Spanish2009.pdf

Spanish
http://www.ataxia.org/pdf/Episodic_Ataxia_Registry-Spanish.pdf

Translations done for UCLA and the Medical University of Rochester, New York

English
http://rarediseasesnetwork.epi.usf.edu/cinch/index.htm

Spanish
http://rarediseasesnetwork.epi.usf.edu/cinch/espanol/
 


Comments

Jacob

01/13/2010 13:48:51

Yo!

Just wanted to say: Great job with the website!
I have a friend who quite recently discovered his EA, and after asking the diseases' name i googled it, and found this. What you describe in your story is actually very similar to how my friend described how the disease affects him.


Keep up the good work!

 

Mark Dias

01/15/2010 08:47:47

Hi jacob,

I am glad you found my site. Your friend most likely will feel he is the only one in the world with this disorder as I did for many years. It is good that he has friends that take an interest in it. Just the fact that you made the effort to look it up tells me that you must indeed be a good friend. I hope you share my site with him. Recently, I have joined facebook, and I have befriended several other individuals with EA. Your friend might want to do that. It is a difficult disorder to live with.

Mark

 

marcia H

03/28/2011 23:47:51

I am experience the same things as you
I work for a Doctor office and they think I am on drugs too. I had an episode today. So I know what you are going though.

 

lucy ch

04/14/2011 14:30:48

hello i have the same ataxia as you described. my family also suffer from this such as my grandad my mother and two brothers. my grandad as got worse with age. i am also the unlucky one who suffers the worst in my family along with my auntie.

 

Ataxia

05/15/2011 09:56:27

It is interesting and new era hats informative article. This has been very helpful understanding a lot of things. I’m sure a lot of other people will agree with me.

 

Mark

05/15/2011 17:20:51

Thanks Ataxia. I am glad it was of service.

 



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