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Ataxia Support Network

Ataxia registry

#1

If you are not registered here at CORDS for rare illnesses please see here:

http://www.sanfordresearch.org/SpecialPrograms/cords/

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#2

When a definite diagnosis of a specific type is made, I intend to register. It’s the very least I can do as my contribution towards awareness, and further research.
:slightly_smiling_face: xB

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#3

Thanks for the link Chas. I wasn’t aware of CoRDS until I saw this site.
I am a firm believer in participating in things like this. I feel they are a good avenue to compile data no matter what your condition is. They may someday, provide scientists, researchers, and doctors with the information they require to find treatment or a cure for ataxias etc.
These sites seldom contact me, however, I know they are working in the background.
Another legitimate registry is RDCRN (Rare Diseases Network) https://www.rarediseasesnetwork.org/

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#4

Good for you hutchy! FYI, CoRDS is recommended by the NAF.

EDIT: Sorry, meant to say both of you. Also, thanks to all who registered.

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#5

Hutchy,
I checked out the website you listed but they are not studying ataxias. I looked under several different names that it could have been listed under. At least I didn’t find it.

Peace,
Piper

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#6

That sure is strange as they previously had them listed under Spino cerebellar Ataxia.
I suspect they have amalgamated them with Autonomic Disorders or something like that. I did notice that was on the list.
I have sent an email to the director to find out what to register for having the condition ataxia.
It may be because “ataxia” is the result of a specific type of neurologic disorder.
My apologies for providing any misleading information if this issue is not resolved. I honestly didn’t check anymore if the ataxias were still listed.
I will be sure to post more information if I hear back from the director of the RDCRN.

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#7

Hutchy-10, ataxia is not a symptom of a specific disorder. It just means that the cerebellum is not working for us as it does for most people. (I believe in neurodiversity-critical theory). There are people on this board with various types of SCA, FA, medication toxicity, surgery for brain cancer (me), etc. Ataxia is a group of symptoms, not a specific disorder.

I tried to register,too,and ran into the problem that I did not fit into any category. I think I will follow your lead and write to them.

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#8

Thanks Hutchy. I am registered with CORDS and when I saw your message, I quickly checked out the website hoping to get registered with them too. Just wanted to let you know what I found.

Thank you,
Piper

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#9

Unfortunately, most doctors and almost all people have the incorrect idea of Ataxia. From what I understand, ataxia with the small a is the symptom while Ataxia with the capital A is the disease itself.

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#10

My apologies. I honestly didn’t intend to misinform anyone. Turns out most ataxias aren’t listed on the rare diseases registry site. I was almost certain there where some.
MSA (my condition) does come up when searched, I suppose that is why I didn’t inquire any further.
I did receive a message back from the director at the registry, I quote:
"Thank you for your email. There are two diseases studied in the Rare Diseases Clinical Research Network (RDCRN) that have ataxia involved. These diseases are studied by the North American Mitochondrial Disease Consortium (NAMDC) and are listed below:
· SANDO: Sensory Ataxia Neuropathy
· NARP: Neuropathy, Ataxia And Retinitis Pigmentosa Syndrome

Any other types of ataxia are not studied by the RDCRN at this time. For more information on ataxia, please visit the National Ataxia Foundation at https://ataxia.org/."

I intend to keep a watch on this site for additions (ataxias) should they be added. I would expect that ataxias would be included in the future since most fall under the category of rare diseases in my opinion.
Again I apologize if I caused anyone frustration or to waste their time on this site.

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#11

How in the world could you possibly waste anyone’s time by trying to be helpful? I’m sure no one is angry at you. Keep up the good work.

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#12

If you are not registered at CORDS, please do so. Link at post #1.

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#13

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#14

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#15

ontact your Senator – tell them to get involved in expediting treatment for patients with rare diseases

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We want you to know about an upcoming Senate hearing that is important for people with Ataxia.

On October 3, 2018 at 2:30 p.m. eastern, U.S. Senator Rand Paul, will hold a hearing entitled “Rare Diseases: Expediting Treatment for Patients.”

The hearing will discuss ways that the needs of persons with rare genetic diseases can be better served when new treatment options are being explored. It is important for U.S. Senators to understand how patients are affected when treatment options are not available.

Read the Media Advisory About the Hearing

Contact your local Senator! Tell them your story. Let them know how Ataxia impacts your daily life and ask them to show up to this hearing to represent your needs.

What: Subcommittee on Children and Families hearing - “Rare Diseases: Expediting Treatment for Patients”

When: Wednesday, October 3, 2018 - 2:30 p.m. eastern

Where: SD-430, Dirksen Senate Office Building

Find Contact Info for My Senator

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#16

Bumping this because you never know where help might come from.

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SCA6 My first fall yesterday