The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education, and research.
NAF is a membership supported, nonprofit organization established in1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families.
This channel shares the faces of ataxia, provides information about ataxia, brings to light challenges those affected by ataxia face, and promotes opportunities to get involved in raising awareness and funds for ataxia. Thank you for watching.
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 .
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.
As a trainee have to say I much prefer the pathological naming immediately reminds you of the actual major structures involved leaves no room for guessing as to patient presentation that is if you understand anatomy (why ❤ neurology).
Maybe you have acquired cerebella ataxia due to celiac disease. I have acquired due to overlooked B1 deficiency (Wernicke encephalopathy) and overlooked hepatic encephalopathy. B1 infusions help me very much
I am Epileptic (absences seizures) taking Lamotrigine for it and have Cerebellum Atrophy/ loosing memory, but not others symptoms yet. One side effect of Lamotrigine is having problems with balance, coordination. I want to know if the Lamotrigine med can harm the Cerebellum? Thanks!
How do you deal with inpatient people when you speak? My husband thinks he knows what I am going to say he interrupts me all the time. And he doesn’t get things correct. Most of the time he isn’t repeating my information correct. I would like to finish my thoughts myself. And he has his own hearing problems.
I really appreciate this! I am disabled because I have ataxia. I have suffered thousands of sleepless nights! This gentleman has done an excellent job in explaining the symptoms! Mine originally started because of a brain tumor in my cerebellum and underwent a crainectomy. My uncontrollable vomiting was thankfully controlled once the tumor was removed. But, all of the other symptoms make me absolutely miserable!!! Every year it's getting worse! I'm definitely going to contact. Thank you very much!
Todo sobre la ataxia no, la curación ni está ni se la espera. De qué sirve que nos cuenten sintomas que conocemos por padecerlos? Hace 16 años que estoy diagnosticada y no ha habido NI UN SOLO AVANCE! Ponganse las pilas ya!
My doctor has not ordered any tests for me, of nutritional deficiencies. I am 89 years old with gluten sensitivity, and salicylate sensitivity. My son is a confirmed Celiac and I think I am one, too but no doctor ever looked for it although I had lots of symptoms except no diarrhea. My son did have it. I have had worsening balance issues for 12 years. Help!
Please get checked for gluten sensitivity and get your vitamin D levels checked. I was experiencing ataxia and stopped gluten after a positive genetic test. You can learn more about this on Dr Peter Osbornes website called Gluten Free Society. You can even purchase the gluten sensitivity genetic test from his website. I hope you can find answers.
I was just diagnosed last week with SCA3. They ran genetic testing and thats how the found it. I started falling a lot. That was my first sign. I stay dizzy. I just want to take care of myself. My parents died and my husband and children left me. I hope they come with a cure soon. I had no my cerebellum shrank. I keep asking myself what I did wrong, nut have no answer or help. Thx for sharing.
Background first - I am a CANVAS patient with dry cough first presenting in 1995 and first symptom of imbalance in 2011. I now prefer to walk with a stick outside of the house. This was a very useful presentation that I came across after the "live" session but here's my question: I have not studied the subjects involved in Dr Cortese's presentation so please forgive me if this is an elementary mistake.. If the recessive gene is present in 1/10 cases and it requires the presence of this gene in both partners, isn't the expected frequency of the disease 1/100? My neurologist has said the frequency (so far) is about 5 in a million. A big difference.
