Відео

I was diagnosed with Spinocerebullar Ataxia in 2021. Symptoms appeared at age 52. However, the SCA is unknown. I see a neurologist at Columbia hospital once a year. But not knowing is very frustrating. My condition is getting worse. I did have DNA test done and results said not hereditary. Iam still in limbo & don't know what to do

Onya Bill!!! Much love!

Thank you! Pretty sure my ataxia was caused by my last stroke in 2020. Have symptoms ever since.

Any attention is good attention. More people need to know about this disease. So thankful for the National Ataxia Foundation.

I'm so happy Bill Nye is involved!!

This is great to create some awareness. It seems like it wasn't planned and Bill was surprised when the anchor asked.

Is there any corration between Spastin and ataxin ?

I have Ataxia for about 8 years, one night I wake up at 3 in the morning with static noise in my left ear...after that I lost my left ear hearing...after that I developed Ataxia, I fall down 3 times an I don't realize I have that problem. After I see an ENT. He say I have Ataxia...that change my life for ever, no longer working and living by myself is very scary. No family o nothing to look over me...only God.

Thank you for your research. I know research takes many years before any kind of treatment is available to the public. I think any kind of treatment will be too late for my family member, but hopefully others will benefit.

May the Lord bless you. I am 71 and had ataxia since I was 10

Somos cubanos pero decidimos en España tengo un hermano q ke diagnosticaron hace más de 15 años ataxia cerebelosa y no le han indicado ninguna medicación sólo vitaminas y cada día está peor q nis recomiendan doctora estamos ahora en España saludos

I am male with no ataxia however, if i marry a female ataxia. Will our future child possible of ataxia. Please respond🙏

i have olivopontocerebellar sca34

Thank you for this comprehensive discussion about gene therapy and ataxia. These are exciting times we live in! I am personally curious to hear more about ASO SCA2 trials involving BIIB105 in the future :) On behalf of everyone affected by the ataxias, thank you for all your efforts on our behalf!

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Thank you . 🙏 from Ontario Canada

How can I get a genetic test for this ataxia?

i have 34 cka

My ataxia disease is very upset

The 7

Ataxia Balance Crutches help people with ataxia balance issues

How to contact Dr Shakkottai My Dad has bilateral olivary hypertrophy . Please reply 🙏

this runs in our family so far I believe I am the first one to test negative for this

Stephanie, Me? My first time with Ataxia was when over a friend's apartment on the third floor and as I left his place, I started down the stairs. I fell down them to the next landing. He heard me, helped me down the rest of the steps. After reaching my place, fell down those steps also. I had to hold on the railing really hard just to use them. I my truck, I had to hold on to the steering wheel so that I wouldn't fall over. That was in 2006. I've been able to overcome a lot of the symptoms but still have to watch doing certain things. I can't dance, run, climb a latter or move very quickly, turn my head in a rush or look up in a quick manner but I get by. Sometimes, I might walk into a doorway and hit the frame. Pickle ball is out of the question! ha ha

Dr. Susan, the first time I experienced Ataxia was at a friend's apt. i was ready to go down the stairs from his place and I tumbled down. Another three times let me know that something was wrong. A visit to my PCP, and an ENT, a neurologist and a couple more finally came up with correct problem. Three months of PT helped a lot. That was 12 years ago.

THANK YOU SO MUCH FOR SHARING THIS VIDEO ❤

Thank you ❤ and thanks God to letting 🙏🏼 me see your video and thanks to

Is there any medical treatment fot Antaxia?

If it was not for eye i could deal with strokecin the brainstem

A brilliant talk,sadly still not understood. Monitoring emotion and grading for a child with ataxia is so misunderstood. As neuro physiotherapy most kids with ataxia find processing issues very challenging. kids are so misunderstood

Thank you so much for sharing your story, Matt and Skylar. My partner and I are considering starting down the path of IVF, it's quite a difficult decision as I'm still asymptomatic.

Good Luck por exemplo no problem

Sentamos processo degenerativo

I'm from Brazil My name is Genivaldo Rodrigues Ribeiro March Chanel sensibility ataxia 7 Generation Word my country Brasil

Congratulations Chanel see you I have si 7 S6

How does a child with cerebral ataxia feel that she cannot be left alone and has anxiety? She feels she needs to constantly hold something, is very emotional sometimes, and has difficulty regulating her emotions. the cognition is not understood in the school. could you advise? How do you think I could help with a neuro physio?

17.54 ....55.45 α-FP

I have dementia at this point. I am 4 months post stroke

The eyes are crazy after a cerebella stroke

Thank you so much for sharing!

What medicines are available for mucous build up and swallowing issues with coughing , My hubby seems to be drowning ,and Noone is helping , God I need some answers ,please help me .

Is there somewhere I can go for appointment I am in London England

www.ncbi.nlm.nih.gov/pmc/articles/PMC8504390/

Do you have any knowledge on SCA 17?

Thank you from Ontario Canada

i have sca it stated at about 50 i am 64 it going fast now

Sca 2 any helpful resource

My son has the sptbn2 gene so we assume its sca5 I also have the same gene duplication I believe but with me no symptoms. However my son does

Thank you for a wonderful presentation. I am a SCA 12 patient under the care of Dr Srivastava in India. I just walked into his clinic after some family members discussed that we should get testing for SCA12 as our parents seem to have the disease.

Great webinar thanks for being part I really appreciate it