National Ataxia Foundation
National Ataxia Foundation
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All About Troriluzole
We have received lots of questions from our community about Troriluzole, an investigational therapy for SCA. In this session, we went over some of the most common questions we have received about Troriluzole. Then there was an open Q&A session for attendees to ask their own questions.
Troriluzole is an investigational therapy that is under evaluation and not approved by the FDA. Anyone considering participating in a clinical trial or trying a new medication should discuss the matter with their physician. The National Ataxia Foundation does not endorse or recommend particular studies or treatment options
About the Speaker-
Title: Susan Perlman, MD
Institution: UCLA
Bio: Dr. Perlman is a graduate of Cornell University and the State University of New York at Stony Brook School of Medicine. She did an internship in medicine, her residency in neurology, and a two-year fellowship in Friedreich’s Ataxia at UCLA Medical Center. Dr. Perlman is currently a Clinical Professor of Neurology and Director of the Ataxia Center at the UCLA Medical Center in Los Angeles, CA. She has been head of the Ataxia Center at UCLA since 1983. She has worked in Ataxia diagnosis for over 30 years and has networked with other “Ataxologists” across the country and around the world, trying to build better collaboration in the development to treatments and ultimately cures. She helped develop the National Ataxia Database for clinical research. She is participating in 2 natural history studies (for dominant Ataxia and Friedreich’s Ataxia) and has participated in 7 clinical drug trials. Dr. Perlman would like to expand the work being done in non-genetic Ataxia as well. Dr. Perlman authored Evaluation and Management of Ataxic Disorders: An Overview for Physicians which has become a valuable resource for NAF. She serves on NAF’s Medical Research Advisory Board and is an ex-officio member of NAF’s Board of Directors.
มุมมอง: 385

วีดีโอ

All About Ataxia Caused by Traumatic Brain Injury (TBI)
มุมมอง 1259 ชั่วโมงที่ผ่านมา
The National Ataxia Foundation is proud to host this webinar presented by Dr. Scott Barbuto on December 3rd, 2024. In "All About Ataxia Caused by Traumatic Brain Injury", our expert joined us to take a look at the causes and symptoms, the typical diagnostic journey for those affected, what to expect for clinical care, and an overview of current research into these diseases. For more information...
Research & Treatment Development for SCA10
มุมมอง 17619 ชั่วโมงที่ผ่านมา
Spinocerebellar Ataxia 10 or SCA10 is a rare neurological disease. The National Ataxia Foundation is proud to host this webinar presented by Dr. Birgitt Schüle on November 25th, 2024. In "Research & Treatment for SCA10", she teaches us how the disease is studied and gives an overview of the current state of research and drug development. For more on SCA10, check out our previous webinar in the ...
All About SCA10
มุมมอง 14614 วันที่ผ่านมา
SCA10 or Spinocerebellar Ataxia 10 is a rare neuromuscular disease. The National Ataxia Foundation is proud to host this webinar presented by Dr. Mario Cornejo-Olivas on November 22nd, 2024. In "All About SCA10", he gave an overview of the causes and symptoms of the disease, the typical diagnostic journey for those affected, and what to expect for clinical care. For more information on Ataxia, ...
Chair Yoga & Mobility for Ataxia | November 24, 2024
มุมมอง 27728 วันที่ผ่านมา
Sacred Mountain Yoga's philosophy is simple, if you can breathe you can do yoga. They teach a non dogmatic, no-fluff approach to yoga. It's accessible for people in chairs and wheelchairs and no previous experience is necessary to attend. Join Natalie as she guides you through a simple sit and stand Chair Yoga class to help reduce aches, muscle tension and improve mood. Speaker: Natalie Marnica...
Coffee Chats for Parents of Children with Ataxia | October 2024
มุมมอง 118หลายเดือนก่อน
Care Partners have an essential role in the lives of their loved ones with Ataxia. In this session, you'll gain insights from a panel of caregivers who share their stories, challenges, and strategies for managing the complexities of rare disease care. Discover a supportive community, learn practical tips, and find strength in shared experiences, all aimed at enhancing your caregiving journey. A...
All About X-Linked Cerebellar Ataxias
มุมมอง 292หลายเดือนก่อน
The National Ataxia Foundation is proud to host this webinar presented by Dr. Ginevra Zanni and Enrico Bertini on October 30th, 2024. In "All About X-Linked Cerebellar Ataxias", these two experts joined us to take a look at the causes and symptoms of X-Linked Cerebellar Ataxia (XLCA), the typical diagnostic journey for those affected, what to expect for clinical care, and an overview of current...
All About Spastic Paraplegia Type 7
มุมมอง 6302 หลายเดือนก่อน
Spastic Paraplegia Type 7 (SPG7) is a rare neurological disease that can display Ataxia as a symptom. The National Ataxia Foundation is proud to host this webinar presented by Dr. Gerald Pfeffer on October 10th, 2024. In "All About SPG7", he gave an overview of the causes and symptoms of SPG7, the typical diagnostic journey for those affected, and what to expect for clinical care, and an overvi...
Ask the Ataxia Expert with Dr. Susan Perlman | October 2024
มุมมอง 1.6K2 หลายเดือนก่อน
Dr. Susan Perlman of UCLA Medical Center in Los Angeles joined us on October 9th, 2024, to answer the community's questions about Ataxia. The National Ataxia Foundation is proud to present this next installment in our Ask the Expert series. To learn from other sessions with Dr. Perlman, visit www.ataxia.org/AsktheExpert Ataxia is a rare neurological disease that can have a wide array of genetic...
Research & Treatment Development for FXTAS
มุมมอง 4542 หลายเดือนก่อน
Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) is a rare neurological disease that can display Ataxia as a symptom. The National Ataxia Foundation is proud to host this webinar presented by Dr. David Hessl on September 23rd, 2024. In "Research & Treatment Development for FXTAS", he gave an overview of how it is studied and gave an overview of the current state of research and drug developm...
Accessible Travel Tips featuring Day Undefined
มุมมอง 1472 หลายเดือนก่อน
The National Ataxia Foundation is proud to host this webinar presented by co-founders of Day Undefined, Liam Dougherty & Kate Leader, on September 19, 2024. You can view our Marketplace provided by Day Undefined on the NAF website here: www.ataxia.org/marketplace/ For more information on Ataxia, please visit our website: www.ataxia.org Become a Free NAF member! bit.ly/JoinNAF Follow us on Socia...
All About DBS | PrepRARE Webinar
มุมมอง 3732 หลายเดือนก่อน
During this webinar, an expert will join us to take a look at deep brain stimulation (DBS) and Ataxia. We will cover: • What is DBS? • How can DBS be used to treat ataxia? • What are the limitations or concerns about DBS? • What research is being done right now on DBS? For more information on Ataxia, please visit our website: www.ataxia.org Become a Free NAF member! bit.ly/JoinNAF Follow us on ...
All About FXTAS
มุมมอง 6782 หลายเดือนก่อน
Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) is a rare neurological disease that can display Ataxia as a symptom. The National Ataxia Foundation is proud to host this webinar presented by Dr. Peter Todd on September 16th, 2024. In "All About FXTAS", he gave an overview of the causes and symptoms of FXTAS, the typical diagnostic journey for those affected, and what to expect for clinical ...
Bill Nye Talks About Ataxia on CNN
มุมมอง 2.7K3 หลายเดือนก่อน
Bill Nye brings awareness to Ataxia and talks about his family's connection to the disease on CNN.
All About Gene Therapy
มุมมอง 3693 หลายเดือนก่อน
In this session, we will learn what gene therapy is, the different types of gene therapy, and how gene therapy could be used to treat Ataxia in the future. We will also discuss the limitations of gene therapy technology, as well as what research is being done right now on gene therapy for Ataxia. If you have questions about gene therapy, this webinar is for you. For more information on Ataxia, ...
NORD: Alone we are rare, Together we are strong
มุมมอง 1183 หลายเดือนก่อน
NORD: Alone we are rare, Together we are strong
What are Donor-Advised Funds (DAF)? | Clip from NAF Tonight
มุมมอง 1194 หลายเดือนก่อน
What are Donor-Advised Funds (DAF)? | Clip from NAF Tonight
Coffee Chats for Parents of Children with Ataxia | Care Partners
มุมมอง 1484 หลายเดือนก่อน
Coffee Chats for Parents of Children with Ataxia | Care Partners
All About Hypertrophic Olivary Degeneration (HOD)
มุมมอง 5844 หลายเดือนก่อน
All About Hypertrophic Olivary Degeneration (HOD)
Coping with the Challenge of Rare Disease: 25 Years of Lessons Learned with Dr. Al Freedman
มุมมอง 4194 หลายเดือนก่อน
Coping with the Challenge of Rare Disease: 25 Years of Lessons Learned with Dr. Al Freedman
Chair Yoga & Mobility for Ataxia | July 24, 2024
มุมมอง 4434 หลายเดือนก่อน
Chair Yoga & Mobility for Ataxia | July 24, 2024
Climbing Kili for a Cure | AAC Video
มุมมอง 914 หลายเดือนก่อน
Climbing Kili for a Cure | AAC Video
Ask the Ataxia Expert with Dr. Susan Perlman | July 2024
มุมมอง 1.7K5 หลายเดือนก่อน
Ask the Ataxia Expert with Dr. Susan Perlman | July 2024
Support for Parents of Adult Children with Ataxia | Care Partners
มุมมอง 2245 หลายเดือนก่อน
Support for Parents of Adult Children with Ataxia | Care Partners
All About SCA12
มุมมอง 5035 หลายเดือนก่อน
All About SCA12
Dr. Maimuna Sali Paul | NAF Science Showcase
มุมมอง 3635 หลายเดือนก่อน
Dr. Maimuna Sali Paul | NAF Science Showcase
Dr. Jacques P. Tremblay | NAF Science Showcase
มุมมอง 1886 หลายเดือนก่อน
Dr. Jacques P. Tremblay | NAF Science Showcase
All About Ataxia with Oculomotor Apraxia (AOA1, AOA2, and AOA4)
มุมมอง 1K6 หลายเดือนก่อน
All About Ataxia with Oculomotor Apraxia (AOA1, AOA2, and AOA4)
NAF Tonight | Spring 2024
มุมมอง 7027 หลายเดือนก่อน
NAF Tonight | Spring 2024
Dr. Hannah Shorrock | NAF Science Showcase
มุมมอง 2237 หลายเดือนก่อน
Dr. Hannah Shorrock | NAF Science Showcase

ความคิดเห็น

  • @fauzanabrar1183
    @fauzanabrar1183 2 วันที่ผ่านมา

    Thanks Dr for such a precious efforts but I have a dought about troriluzole, because I have consumed riluzole 50 Mg for three months but it didn't not benefited for me that's why I have some fear regarding its work for me I am suffering from sca3 72 repeat any suggestions please appreciated before

  • @nourdzair552
    @nourdzair552 2 วันที่ผ่านมา

    ❤ Thank you

  • @MarshaMarshaMarsh4
    @MarshaMarshaMarsh4 8 วันที่ผ่านมา

    So my Chiari Malformation is possibly the cause of this?

  • @MarshaMarshaMarsh4
    @MarshaMarshaMarsh4 8 วันที่ผ่านมา

    Wish you had dumbed it down for me.

  • @MarshaMarshaMarsh4
    @MarshaMarshaMarsh4 8 วันที่ผ่านมา

    Could all of this be caused by beatings ?

  • @ajaybhati6080
    @ajaybhati6080 8 วันที่ผ่านมา

    I have Fredrich ataxia if anyone have similar disease please contact me

  • @larsha01
    @larsha01 8 วันที่ผ่านมา

    I recently found out about CANVAS after years and years of miss and undiagnosed issues and my symptoms and imparements line up with CANVAS. I'm based in Melbourne and right before I clicked on this video I was wondering if anyone in Australia has knowledge of CANVAS. It's really good to know someone down here cares about these rare conditions.

  • @mariaibanez2591
    @mariaibanez2591 9 วันที่ผ่านมา

    Tuve dos derrames cerebrales antiguos que ni los senti nada mas mi PARPADO caido el ojo derecho el neurologo me lo dijo por presion alta altisima diria yo llege a tenerla a 200 pero ahorita esta controlada por mi cardiologo me quedo disartria y voluumen bajo lo mio es ataxia gracias

  • @JohnMartinSmartTV
    @JohnMartinSmartTV 14 วันที่ผ่านมา

    Great content, as always! A bit off-topic, but I wanted to ask: I have a SafePal wallet with USDT, and I have the seed phrase. (alarm fetch churn bridge exercise tape speak race clerk couch crater letter). What's the best way to send them to Binance?

  • @jo-annecaisse621
    @jo-annecaisse621 17 วันที่ผ่านมา

    Sca27b

  • @tonukaman512
    @tonukaman512 21 วันที่ผ่านมา

    Pleased, make medicine for ataxias

  • @blueslover1711
    @blueslover1711 29 วันที่ผ่านมา

    My mom has this. Hopefully I can get tested in a few weeks

  • @ankitmishra55773
    @ankitmishra55773 หลายเดือนก่อน

    very informative...such less information out there for cerebellum ataxia ...thanks a ton for putting this online

  • @joanamarando5038
    @joanamarando5038 หลายเดือนก่อน

    Thank u for your informative presentation❤

  • @ankitmishra55773
    @ankitmishra55773 หลายเดือนก่อน

    Pls share the herbs....my mother suffers from pcd.. ofcourse we will do our research before using them

  • @VernonRhem
    @VernonRhem หลายเดือนก่อน

    I'm trying to find that list

  • @il3mendo
    @il3mendo หลายเดือนก่อน

    Celiac disease with hypothyroidism Addison s pernicious anemia autoimmune gastritis, mthfr mutation and hereditary spastic paraplegia spg4 (Arg/cys). I am improving my upper motor neuron and I do really think that my Ataxia was caused by the Gad65 antibodies and vitamin b12 deficiency. Any studied on upper motor neurons and autoimmunity correlation ? I know that with my celiac I developed fat malabsortion (vitamin e) and gastritis (b12 and folate deficiency) Glad to hear

  • @danielray5846
    @danielray5846 หลายเดือนก่อน

    I developed some sort of ataxia..about 3 years ago I don’t know the type, I feel like my fine motor skills were detoriating for a while,no family history.

    • @ataxiafoundation
      @ataxiafoundation หลายเดือนก่อน

      Hello, you may find our webinar on Ataxia with Unknown Family History helpful: th-cam.com/video/35o0pJ_mX2c/w-d-xo.html

  • @79jcandy
    @79jcandy หลายเดือนก่อน

    Sca1 46 yrs old also other problems of course using a walker long distance like Walmart lol in a chair

    • @OldManDerp
      @OldManDerp 27 วันที่ผ่านมา

      I am sitting here wondering if it's time for me to use a chair. I have gone from being able to at least get around some, but the last couple months i've gone downhill. Walking is starting to hurt and I am so tired just going to the kitchen.

    • @79jcandy
      @79jcandy 27 วันที่ผ่านมา

      @@OldManDerp what is weird I walk ok at home no walker as soon as I step outside its like I totally forget how to walk

  • @MrMakpak123
    @MrMakpak123 หลายเดือนก่อน

    Dr Perlman, may ur frataxin keep working tirelessly for the tired ataxic patients....true inspiration...stay blessed...especially for ur home work

  • @csabav2372
    @csabav2372 หลายเดือนก่อน

    I nave CANVAS taxia do you have some idea how i can slow down?

  • @KevinPullins
    @KevinPullins หลายเดือนก่อน

    speaking from my possible MNGIE Dx and all the sx's aligned with any all these. I can only ask, how impressive it is to have this depth of information. ONLY to recognize people like myself seeking ANY MF AMA physician who CARES that listen to my misery as well where the FK to go..as usual the industry is so proud to do research with Data that goes unused*, NO one getting help on this probable genetic autoimmunity. SHOW me where i can get HELP of any kind? that wont deny me IE: "Barrows", in Phoenix and "Mayo" in Scottsdale. My neurologist Stephan Flitman as well my D.O Dr Alessi in Arizona on infectious disease docs are shrugged shoulders not knowing where to send me..i had to order the Genetic TYMP test.. I had to ask for MIBG or Pet for neoplasms and the Spinal tap(-) in all syndromes GBS MG MS etc.. so now what..?

    • @KevinPullins
      @KevinPullins หลายเดือนก่อน

      Post;;; rt pontine vestibular CVA, left hemi 3 years ago had good rehab with muscle then i'd say got 85% back. now progressive last 2 years plus atrophy legs arms bilat weakness deep fatigue near POTs alike any exercise from kitchen to bathroom faintness nausea dizziness. bilat peroneal neuropathy severe, actual double vision cannot focus on anything nystagmus alike. this "Bilat" progressive misery is why i know it aint the CVA affiliated maybe potential partial affected by the cva but not the cause. from Mycotoxin, "fire on the brain" versus MNGIE the sigmoid perforation last year certainly made this misery just that much more intolerable.

  • @VernonRhem
    @VernonRhem หลายเดือนก่อน

    My question i had stroke. Can ataxia muscles the eye musles?and far as getting the vaccine I think it stroked me double edge sword

    • @VernonRhem
      @VernonRhem หลายเดือนก่อน

      I mean, can ataxia affect the eye muscles you explained, yes

  • @nekogabedava1763
    @nekogabedava1763 หลายเดือนก่อน

    We are from Georgia. My daughter, who is 19 years old, has Friedrich's ataxia. We do not receive any treatment or therapy, due to the fact that there is no treatment for our disease in our country. Our problems started at the age of 10-11. Now we are already kaliaska sitting in the . Please help me, how should I act?! I really want to put him in a program to improve his daily life and health

  • @suziesuzie9455
    @suziesuzie9455 หลายเดือนก่อน

    I am a carrier of this but I am certain this is my diagnosis. I have all the symptoms and abnormal mitochondria. I well believe it can be dominant.

  • @il3mendo
    @il3mendo หลายเดือนก่อน

    Have you currently taken any video on spg 4 ?

  • @il3mendo
    @il3mendo 2 หลายเดือนก่อน

    I have gluten ataxia and an upper motor neuron called hereditary spastic paraplegia. Both of the diseases overlaps with their symtoms. What helped me was finding my celiac disease diagnosis, high supplementation with Vitamin E/D/A end electrolytes such potassium, zinc, magnesium and manganese. With the high fat diet the homocysteine decreased down to normal levels. And also my dislypidemia and fasting glucose/insulin came back in normal range

    • @il3mendo
      @il3mendo 2 หลายเดือนก่อน

      The upper motor neuron disease is due to Arginine/cysteine mutation.

  • @Ayako12n
    @Ayako12n 2 หลายเดือนก่อน

    I am in Canada. Incredibly thankful to you for doing this

  • @IamSallyLo
    @IamSallyLo 2 หลายเดือนก่อน

    Dr. Susan. Could you give me the detail of stem cell program in Taiwan ? I would love to know more about that please ?

  • @dianecain3975
    @dianecain3975 2 หลายเดือนก่อน

    Hi. I am 77. Have been diagnosed over 10 years ago. Type, unknown. Mother and grandfather had. Mom started at 50. Have been tested for type, but no type indicated. I use sight for balance a lot. I know because of low light situations. I go gym 3 days a week. Know I am going to fall and like to get up and not being hurt. Oh, MRI shows lesions..

  • @johandejager6575
    @johandejager6575 2 หลายเดือนก่อน

    I am really worried, because it seems now that it is busy affecting my eyes. Johan

  • @johandejager6575
    @johandejager6575 2 หลายเดือนก่อน

    I am 59 years old in johannesburg south africa and suffer from ataxia speech and walking problems? PLEASE HELP

  • @Sakibhridoy-u2h
    @Sakibhridoy-u2h 2 หลายเดือนก่อน

    I suffer from Friedreich's ataxia. I can't walk at all. How can I heal?

  • @davidmondragon7616
    @davidmondragon7616 2 หลายเดือนก่อน

    Wife has sca 2 and she's really sensitive to lights and loud or too much going on around her surrounding. Is that normal with ataxia or is this that could be from something else.

  • @deborahtofflemire7727
    @deborahtofflemire7727 2 หลายเดือนก่อน

    Thank you from Ontario Canada. Do you have much information on the vax the jab and ataxia . I started all my symptoms 3years ago after my second vax. .i was very healthy before. I am falling a lot more . And I use a walker now. I do choke on liquids.any thoughts to help. I already had problems with nystagmus from birth . But the other problems started after the 2end vax or jab. Any meds. I am 67 years old.

    • @sandyelliott3350
      @sandyelliott3350 หลายเดือนก่อน

      My Ataxia was minor and stable until I got the Covid vaxx. Now I'm falling all the time and tremors are worse.

  • @inamp1
    @inamp1 2 หลายเดือนก่อน

    Thank you for providing this!

  • @FredFlinstone-ic5op
    @FredFlinstone-ic5op 2 หลายเดือนก่อน

    i have type34sca

  • @myriamruthnicolaudealmeida1292
    @myriamruthnicolaudealmeida1292 2 หลายเดือนก่อน

    Não compreendo o idioma inglês... Como passar para o português?!

    • @MrSayantan2010
      @MrSayantan2010 2 หลายเดือนก่อน

      clique em configurações, depois em legendas, depois em tradução automática e selecione Português

  • @MaríamarcosSánchez
    @MaríamarcosSánchez 2 หลายเดือนก่อน

    Tengo ataxia no tengo familia con con ataxia lo que más me preocupa no poder hablar y caminar

  • @pennybetzios1939
    @pennybetzios1939 2 หลายเดือนก่อน

    My hubby has this disease

  • @VernonRhem
    @VernonRhem 2 หลายเดือนก่อน

    I had dttpke got me in the cellvelum hard quality of life gone

  • @halouanehoussam9619
    @halouanehoussam9619 2 หลายเดือนก่อน

    thanks

  • @il3mendo
    @il3mendo 2 หลายเดือนก่อน

    Correlation: astrocytes/interleukin/mhc2/mthfr atp/ Ros/ vitamin b12 and Purkenjee cells/glutamic acid.

  • @deborahtofflemire7727
    @deborahtofflemire7727 2 หลายเดือนก่อน

    Thanks from Ontario Canada

  • @AnthonyGargiula-y4h
    @AnthonyGargiula-y4h 2 หลายเดือนก่อน

    Living with Trimethylaminuria was a big mess not until I came across Dr okouromi on TH-cam, the holistic herbal doc whose herbal medication and body cleanser finally cured me and restored my life after 5 years of battling with it, no side effects it took 3 weeks and got cured completely with his alternative Herbal treatment. ❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹❤❤

  • @ajaybhati6080
    @ajaybhati6080 2 หลายเดือนก่อน

    i hope problem related to balance and coordination will have solution very soon i am patient of FRIEDREICH ATAXIA

  • @deborahtofflemire7727
    @deborahtofflemire7727 2 หลายเดือนก่อน

    Thank you from Ontario Canada

  • @jonathandekleuver9153
    @jonathandekleuver9153 2 หลายเดือนก่อน

    Hello, thanks for the informative video. I have Episodic Ataxia type 2 since I was about 12 (although it was only diagnosed when I was 30). I noticed that I have the attacks more frequent over time, and now I have an attack once every two days or something (more if I play sports). I'm a bit nervous about your statement that these episodic attacks can become chronic. What are the changes that I develop chronic Ataxia? Is that common?

  • @deborahtofflemire7727
    @deborahtofflemire7727 2 หลายเดือนก่อน

    Can you talk about ataxia and digesting food? Stomach problems?I live in Ontario

  • @deborahtofflemire7727
    @deborahtofflemire7727 2 หลายเดือนก่อน

    Can you talk about ataxia and digesting food?