National Ataxia Foundation
National Ataxia Foundation
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All About FXTAS
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 care.
For more information on Ataxia, please visit our website: www.ataxia.org
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Ataxia Subreddit: www.reddit.com/r/ataxia/
About the Speaker-
Peter Todd, MD, PhD
Bio: Peter K. Todd, MD, PhD, is the Bucky and Patti Harris Professor and an Associate Professor in the Department of Neurology. As a clinician, Dr. Todd sees patients at both the University of Michigan and at the VA Medical Center in Ann Arbor. He co-directs the UM Ataxia clinic where he sees patients with inherited and sporadic Ataxias. He also co-directs the UM Fragile X Clinic and sees adult patients with Fragile X Syndrome and Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) in that setting. He serves as inaugural director of the Clinical Neurogenetics Research Program, which aims to improve research and care for patients with inherited neurological disorders.
As a physician scientist, Dr Todd’s lab studies the mechanisms by which nucleotide repeat expansions cause neurodevelopmental and neurodegenerative disorders with a long term goal of developing novel therapeutics for currently untreatable conditions. His lab has published extensively on Fragile X-associated disorders, such as Fragile X Syndrome and Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) as well as C9orf72 repeat expansions that cause ALS and frontotemporal dementia. Recent research is also exploring the roles of repeat expansions in more common neurological diseases. His lab has been continuously funded by the NIH and VA since its inception and he serves as co-director of one of three National Fragile X Research Centers established by the NIH in 2020.
About the Series:
NAF is producing a series of monthly educational webinars that focus on one type of Ataxia at a time. Each month we will feature a different type. Clinical experts will join us to take a look at the causes and symptoms of the disease, the typical diagnostic journey for those affected, and what to expect for clinical care. Research experts will teach us how the disease is studied and give an overview of the current state of research and drug development.
Переглядів: 157

Відео

Bill Nye Talks About Ataxia on CNN
Переглядів 2 тис.16 годин тому
Bill Nye brings awareness to Ataxia and talks about his family's connection to the disease on CNN.
All About Gene Therapy
Переглядів 27421 день тому
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
Переглядів 9721 день тому
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, they elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community. Join us to learn how NORD can work with the Ataxia community on our goal of accelerating treatment development and improving the liv...
What are Donor-Advised Funds (DAF)? | Clip from NAF Tonight
Переглядів 107Місяць тому
In the latest episode of NAF Tonight, David Schwandt, NAF's financial advisor for over 20 years, covers what Donor-Advised Funds (DAF) are and how they can have a positive impact on NAF. To learn more about DAFs, visit here: myimpact.ataxia.org/daf/ Become a Free NAF member! bit.ly/JoinNAF Follow us on Social Media! NAF Facebook: ataxiafounda... NAF Twitter: NAF_Ataxia ...
Coffee Chats for Parents of Children with Ataxia | Care Partners
Переглядів 126Місяць тому
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 Hypertrophic Olivary Degeneration (HOD)
Переглядів 422Місяць тому
Hypertrophic Olivary Degeneration (HOD) 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. Vikram Shakkotai on August 6th, 2024. In "All About HOD", he gave an overview of the causes and symptoms of HOD, the typical diagnostic journey for those affected, what to expect for clinical care, and an overv...
Coping with the Challenge of Rare Disease: 25 Years of Lessons Learned with Dr. Al Freedman
Переглядів 376Місяць тому
Coping with the Challenge of Rare Disease: 25 Years of Lessons Learned with Dr. Al Freedman
Chair Yoga & Mobility for Ataxia | July 24, 2024
Переглядів 283Місяць тому
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...
Climbing Kili for a Cure | AAC Video
Переглядів 84Місяць тому
Climbing Kili for a Cure | AAC Video
Ask the Ataxia Expert with Dr. Susan Perlman | July 2024
Переглядів 1,3 тис.2 місяці тому
Dr. Susan Perlman of UCLA Medical Center in Los Angeles joined us on July 10, 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 ori...
Support for Parents of Adult Children with Ataxia | Care Partners
Переглядів 1882 місяці тому
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 SCA12
Переглядів 3822 місяці тому
Spinocerebellar Ataxia Type 12 or SCA12 is a rare neuromuscular disease. The National Ataxia Foundation is proud to host this webinar presented by Dr. Russell Margolis on June 28th, 2024. In "All About SCA12", he gave an overview of the at the causes and symptoms of the disease, the typical diagnostic journey for those affected, what to expect for clinical care, and an overview of current resea...
Dr. Maimuna Sali Paul | NAF Science Showcase
Переглядів 3273 місяці тому
Hypotonia, Ataxia, & Delayed Development syndrome (HADDS) is one type of a single gene disorder. Individuals with this condition exhibit cerebellar ataxia, motor incoordination, global developmental delay, autistic features, & variable intellectual disabilities. Cerebellar vermian hypoplasia is the most commonly identified abnormality on brain imaging studies of individuals with HADDS. This con...
Dr. Jacques P. Tremblay | NAF Science Showcase
Переглядів 1743 місяці тому
Dr. Jacques P. Tremblay | NAF Science Showcase
All About Ataxia with Oculomotor Apraxia (AOA1, AOA2, and AOA4)
Переглядів 7083 місяці тому
All About Ataxia with Oculomotor Apraxia (AOA1, AOA2, and AOA4)
NAF Tonight | Spring 2024
Переглядів 6914 місяці тому
NAF Tonight | Spring 2024
Dr. Hannah Shorrock | NAF Science Showcase
Переглядів 2114 місяці тому
Dr. Hannah Shorrock | NAF Science Showcase
All About SYNE1 Ataxia
Переглядів 4134 місяці тому
All About SYNE1 Ataxia
Chair Yoga & Mobility for Ataxia | May 1, 2024
Переглядів 4194 місяці тому
Chair Yoga & Mobility for Ataxia | May 1, 2024
All About Ataxia Caused By Stroke
Переглядів 5164 місяці тому
All About Ataxia Caused By Stroke
CRC-SCA Natural History Study Information Panel | PrepRARE
Переглядів 4045 місяців тому
CRC-SCA Natural History Study Information Panel | PrepRARE
Ask the Ataxia Expert with Dr. Susan Perlman | April 2024
Переглядів 2,4 тис.5 місяців тому
Ask the Ataxia Expert with Dr. Susan Perlman | April 2024
All About SCA14
Переглядів 3615 місяців тому
All About SCA14
Research and Treatment Development for SCA5
Переглядів 3066 місяців тому
Research and Treatment Development for SCA5
Support for Spouses and Partners | Care Partners
Переглядів 4126 місяців тому
Support for Spouses and Partners | Care Partners
Bill Nye Returns to the Annual Ataxia Conference
Переглядів 9756 місяців тому
Bill Nye Returns to the Annual Ataxia Conference
All About SCA5
Переглядів 4136 місяців тому
All About SCA5
Dr. Shane Hellyer | NAF Science Showcase
Переглядів 2496 місяців тому
Dr. Shane Hellyer | NAF Science Showcase
Mike Cammer’s Florida 500 Fundraiser
Переглядів 1547 місяців тому
Mike Cammer’s Florida 500 Fundraiser

КОМЕНТАРІ

  • @GoodtoGaia
    @GoodtoGaia День тому

    His story is the same as so many. Same for me - my grandfather, father, brother and me. Aunts, uncles, cousins…😢

  • @haydeemarquez3878
    @haydeemarquez3878 День тому

    Soy de Venezuela estado Aragua Maracay

  • @haydeemarquez3878
    @haydeemarquez3878 День тому

    Hay jóvenes que realizan movimientos en las manos o dedos y cuello o cuando tituvea al hablar

  • @haydeemarquez3878
    @haydeemarquez3878 День тому

    Quiero saber mucho de esta enfermedad

  • @haydeemarquez3878
    @haydeemarquez3878 День тому

    Que interesante es

  • @inamp1
    @inamp1 2 дні тому

    Great awareness! Just want to note that not all ataxias are inherited. Some types are acquired.

  • @Ataxia_life
    @Ataxia_life 2 дні тому

    Thank you, Bill Nye, for raising awareness of our rare disease!

  • @Sy2023hk
    @Sy2023hk 3 дні тому

    Thanks for sharing, doing some checks to see if I have it. I have poor physical coordination

  • @Borsody440
    @Borsody440 6 днів тому

    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

  • @JGL.
    @JGL. 7 днів тому

    Onya Bill!!! Much love!

  • @sheldonf
    @sheldonf 7 днів тому

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

  • @jameslambert6665
    @jameslambert6665 7 днів тому

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

  • @sarahfaber9983
    @sarahfaber9983 7 днів тому

    I'm so happy Bill Nye is involved!!

  • @rooksgj
    @rooksgj 7 днів тому

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

  • @il3mendo
    @il3mendo 7 днів тому

    Is there any corration between Spastin and ataxin ?

  • @aztecmkx
    @aztecmkx 9 днів тому

    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.

  • @cky5573
    @cky5573 13 днів тому

    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.

  • @carolbennett1823
    @carolbennett1823 14 днів тому

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

  • @JuanaDeliaAlonsoTamayo
    @JuanaDeliaAlonsoTamayo 16 днів тому

    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

  • @PegujiReviews
    @PegujiReviews 17 днів тому

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

  • @FredFlinstone-ic5op
    @FredFlinstone-ic5op 19 днів тому

    i have olivopontocerebellar sca34

  • @bricoleuse
    @bricoleuse 21 день тому

    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!

  • @cnbinoz
    @cnbinoz 23 дні тому

    Screen lines from page 2

  • @deborahtofflemire7727
    @deborahtofflemire7727 23 дні тому

    Thank you . 🙏 from Ontario Canada

  • @LalMuhammadAfghanLalMuhammadAf

    How can I get a genetic test for this ataxia?

  • @FredFlinstone-ic5op
    @FredFlinstone-ic5op 24 дні тому

    i have 34 cka

  • @LalMuhammadAfghanLalMuhammadAf

    My ataxia disease is very upset

  • @michaelrosselle5421
    @michaelrosselle5421 25 днів тому

    The 7

  • @maryellenmckenna5947
    @maryellenmckenna5947 26 днів тому

    Ataxia Balance Crutches help people with ataxia balance issues

  • @kismet512
    @kismet512 26 днів тому

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

  • @andrewb88
    @andrewb88 28 днів тому

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

  • @dalemettee1147
    @dalemettee1147 29 днів тому

    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

  • @dalemettee1147
    @dalemettee1147 Місяць тому

    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.

  • @hasmicdavidian5969
    @hasmicdavidian5969 Місяць тому

    THANK YOU SO MUCH FOR SHARING THIS VIDEO ❤

  • @hasmicdavidian5969
    @hasmicdavidian5969 Місяць тому

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

  • @billyduplessis2370
    @billyduplessis2370 Місяць тому

    Is there any medical treatment fot Antaxia?

  • @VernonRhem
    @VernonRhem Місяць тому

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

  • @birkdaleneurorehabilitatio9539
    @birkdaleneurorehabilitatio9539 Місяць тому

    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

  • @branchlimbs
    @branchlimbs Місяць тому

    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.

    • @branchlimbs
      @branchlimbs Місяць тому

      It really is helpful to hear someone else's concrete experience. Thank you!

  • @sinsibilityataxia7
    @sinsibilityataxia7 2 місяці тому

    Good Luck por exemplo no problem

  • @sinsibilityataxia7
    @sinsibilityataxia7 2 місяці тому

    Sentamos processo degenerativo

  • @sinsibilityataxia7
    @sinsibilityataxia7 2 місяці тому

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

  • @sinsibilityataxia7
    @sinsibilityataxia7 2 місяці тому

    Congratulations Chanel see you I have si 7 S6

  • @birkdaleneurorehabilitatio9539
    @birkdaleneurorehabilitatio9539 2 місяці тому

    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?

  • @drroussakis
    @drroussakis 2 місяці тому

    17.54 ....55.45 α-FP

  • @Hartleymolly
    @Hartleymolly 2 місяці тому

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

  • @Hartleymolly
    @Hartleymolly 2 місяці тому

    The eyes are crazy after a cerebella stroke

  • @mariannekintaert1320
    @mariannekintaert1320 2 місяці тому

    Thank you so much for sharing!

  • @angelashort1331
    @angelashort1331 2 місяці тому

    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 .

  • @christinaantoine928
    @christinaantoine928 2 місяці тому

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