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My Quest to Cure Prion Disease — Before It’s Too Late | Sonia Vallabh | TED

Biomedical researcher Sonia Vallabh’s life was turned upside down when she learned she had the genetic mutation for a rare and fatal illness, prion disease, that could strike at any time. Thirteen years later, her search for a cure has led to new insights about how to catch and prevent disease — and how to…

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Biomedical researcher Sonia Vallabh’s life was turned upside down when she learned she had the genetic mutation for a rare and fatal illness, prion disease, that could strike at any time. Thirteen years later, her search for a cure has led to new insights about how to catch and prevent disease — and how to honor our grandest, most mysterious inheritance: our brains.

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45 Comments

45 Comments

  1. @kevinwilliams3272

    June 3, 2024 at 10:31 am

    You’re an extraordinarily beautiful person, Sonia, and your talk is so moving. You’ve got everybody behind you, everybody wants you to live as long as possible. I can understand you wanting to point out the one “positive” aspect of your mother’s death, namely that her being diagnosed with the disease subsequently enabled you to be diagnosed with it too and find a way to have children without a risk of direct transmission of the disease to them, but the truth is that these diseases SHOULD NOT exist, and WOULD NOT in a better world. BON COURAGE, as the French say. ♥♥♥♥♥♥♥♥♥♥

  2. @ShaowenJu

    June 3, 2024 at 11:12 am

    Very moving story but what did you actually discover?????

  3. @akbarnezrab8982

    June 3, 2024 at 11:21 am

    Amazing person thank you ❤

  4. @ExploreEmbraceExpress

    June 3, 2024 at 11:37 am

    My cousin died of a brain tumor and I ended up with a tumor on my skull which left me with a piece of my skull missing. (I have a metal plate)

    I really appreciate the effort and time you are dedicating to this.

    You are an earth angel and a hero in my eyes????

  5. @aalhard

    June 3, 2024 at 11:47 am

    Does it make your tongue to big for your mouth?

  6. @JakMang

    June 3, 2024 at 11:55 am

    Seems like you already have sick patients based on the genetic diagnosis

  7. @user-pu9ly9gi5y

    June 3, 2024 at 12:12 pm

    It gave me goosebumps for real

  8. @A0789IJP-vh9zk

    June 3, 2024 at 12:50 pm

    I’m not an academia but currently figuring out myself and my mental health including limerence, maladaptive daydreaming, delusional, trauma and the combination of all. Turn out I rather know myself before other

  9. @Pro-kesh

    June 3, 2024 at 1:08 pm

    we advance

  10. @miloavram5842

    June 3, 2024 at 1:19 pm

    i can help you with ‘ simple ‘ biology, please contact me,

  11. @AlysonArchibequeDavis-kv1bx

    June 3, 2024 at 1:42 pm

    I agree Sonia is extraordinary! And that husband of hers—what a team of unconditional love and commitment. Beautiful display of humanity and guide to how the future can look when we stop asking for permission or waiting for someone else to come and save us. They’re doing it themselves. Let’s be more like them. All of us. Let’s do the things that help us all without waiting for our institutions. Those are on their way out anyway. Watch the Daniel Lubeyetsky (I think I’m close) TED talk on being builders. ????

  12. @franciskalambayi3171

    June 3, 2024 at 1:42 pm

    We all are racing against a clock we cannot see if you ask me
    Her disease has only accentuated this reality and catapulted her on a mission to do something stupendous with life
    I salute her resolve to do something in lieu of living in fear

  13. @user-ok9ym9zm9m

    June 3, 2024 at 2:36 pm

    Amazing you do not know what is in the emf weapons for toxins since last year ? Been to hospital its not emergency I was told charged $800 ?

  14. @blockonblockonblockonblock

    June 3, 2024 at 2:47 pm

    ???????? Incredible.

    Here are my toughts on the wider topic:

    With advancements in genetic engineering and its lowering costs, we will soon be able to go far beyond what we currently envision. Genes that influence biological aging can be modified, which is significant since aging affects an incredible subset of diseases.

    Cosmetic genetic engineering, which involves changing one’s functions or appearance—such as eye color or hair color—will also advance. As the field and technology progress further, even more extreme changes may become possible. While there are ethical considerations to be made here, ultimately, it should be the free choice of the individual to decide these things, as long as those changes do not cause bodily harm or extreme offense to others.

    Consider a commercially available telescope from the 1900s, a little over a hundred years ago. Compare it to today’s telescopes, where for relatively little investment (less than $10,000), you can literally see the remains of the moon landing. With a modest investment, even more extraordinary observations can be made.

    This illustrates how progress works, and today, advancements in any given field are occurring even faster. Genetic engineering is no exception and will likely follow a similar trajectory of rapid and transformative development. While what we would generally consider fair use of genetic engineering might change over time as societal views evolve, misuse and ethical breaches are also likely, given current human nature.

  15. @2ontheroad78

    June 3, 2024 at 2:54 pm

    As someone currently watching his father be taken away from us by sporadic Creutzfeldt-Jakob disease, this woman is my hero. Help won’t come in time for my father, but maybe she will help save others in the future from this horror my family is living through now.

    • @craven5328

      June 3, 2024 at 9:22 pm

      Oh dear…I am so incredibly sorry. I wish there was some consolation I could offer that would put even the smallest dent in the grief you must be feeling.

  16. @Rene-uz3eb

    June 3, 2024 at 3:46 pm

    I think it was heat shock proteins imbalance, required to repair misfolded proteins.

    Also
    Prion diseases: copper deficiency states associated with impaired nitrogen monoxide or carbon monoxide transduction and translocation, 2001

    My guess is it’s simply copper deficiency.
    The prion proteins take up copper. In India, prion disease is unheard of, and the soil there has plenty of copper, and vegetarianism in India further provides plenty of copper in the diet.

    • @darinherrick9224

      June 4, 2024 at 12:31 am

      Very interesting. Unfortunately there’s no fortune to be made selling nutritious food and dietary supplements so no one cares.

    • @Rene-uz3eb

      June 4, 2024 at 12:35 am

      maybe that’s the problem, no fortune should be able to be made, treating people?

    • @duckbrah9460

      June 6, 2024 at 5:35 pm

      @@Rene-uz3eb My friend, she said that she has genetic prions disease. Prion disease is a very rare disease; it definitely occurs in India. Are you’re are a biochemist/ biomedical scientist?

      It has been known for a while that copper plays a role in the misfolding of prion proteins. However it has been suggested that: “by creating a mutation in mice that lowers the amount of circulating copper by 60 percent, we’ve shown that reducing copper can delay the onset of prion disease.”

  17. @leopardscanfly

    June 3, 2024 at 4:00 pm

    What an inspiring life story. Your resilience and strength are very humbling. Thanks for this talk!

  18. @arihantjainhant

    June 3, 2024 at 4:24 pm

    can anyone tell me…does cancer comes in prion disease?

    • @duckbrah9460

      June 6, 2024 at 5:39 pm

      No. Cancer as a disease, is caused by a completely different mechanism, and is at a cellular scale. Prions disease involves misfolded proteins; a typical human cell is about 1,000 – 12,000 times bigger than a typical protein.

  19. @evslone

    June 3, 2024 at 4:42 pm

    I am fortunate to have a front-row seat on the amazing work being done by some of the world’s leading medical researchers treating children. Your TED Talk is unbelievably poignant, eloquent and inspiring. The work you and your partner are achieving will benefit unknown numbers of people across the nation and around the world. My brother-in-law and his family suffered through his battle with Lewy Body Dementia, a different kind of lethal protein disease stemming from alpha-synuclein. You have a clarity of goal and mission few of us can even imagine, a life-saving mission for yourself but for untold numbers of others as well. May you find fulfillment in every way.

  20. @rgray83z

    June 3, 2024 at 4:53 pm

    ????

  21. @alyssastewart738

    June 3, 2024 at 5:43 pm

    I knew I recognized this woman from somewhere! I think it was a show about different families who are doing studies trying to figure out the disease? I’m not sure! Does anyone else remember by chance?

    • @angierobyn3853

      June 4, 2024 at 8:05 am

      Yes she was on 60 minutes (Australia). There was an Australian brother and sister with the same disease and they went over to meet her and participate in the research.

    • @alyssastewart738

      June 4, 2024 at 8:26 am

      @@angierobyn3853 yup that’s it! thanks so much!

  22. @firedawn

    June 3, 2024 at 7:43 pm

    Absolutely amazing Sonia. You are inspiring. Thank you for sharing!

  23. @NashPotatoesOutdoorShow

    June 3, 2024 at 8:44 pm

    I don’t think that “everything happens for a reason” either!

  24. @YawnGod

    June 3, 2024 at 9:12 pm

    The meaning of life, everybody!

  25. @AFFLICTED269

    June 3, 2024 at 9:24 pm

    Covid has been proposed of being a prion ????

    • @duckbrah9460

      June 6, 2024 at 5:41 pm

      Then everybody I know would be dead including myself. Corona *virus* the well known misfolded *protein*.

  26. @fa1rumi

    June 3, 2024 at 11:00 pm

    Wishing you peace and happiness

  27. @darinherrick9224

    June 4, 2024 at 12:28 am

    I hate to break it to you. In the long run we are all dead.

  28. @HighNoone

    June 4, 2024 at 12:41 am

    Lol????

  29. @ericapelz260

    June 4, 2024 at 3:41 am

    Wow!

  30. @deliyomgam7382

    June 4, 2024 at 4:21 am

    This is a very sensitive topic….mutate the mutation so it actually do different things instead of causing disease…since alpha fold is already here.

  31. @TheMrmoc7

    June 4, 2024 at 9:06 am

    “Real courage is when you know you’re licked before you begin, but you begin anyway and see it through no matter what.” ~ Harper Lee.
    Thank you for sharing your courage with us Sonia.

  32. @garcipat

    June 4, 2024 at 1:09 pm

    i wish you best luck and support for your mission!

  33. @WkurzonaWrona

    June 4, 2024 at 5:28 pm

    I wish You luck. ❤

  34. @gorogorotodoro

    June 5, 2024 at 2:32 am

    What an inspiration. All the best to you and your team in your research

  35. @jamiegallier2106

    June 5, 2024 at 1:49 pm

    ❤❤❤

  36. @fauxvier8519

    June 6, 2024 at 4:06 am

    I LOVE HER

  37. @osamaAhmed-oi7km

    June 6, 2024 at 8:43 am

    Thanks that really good point and thanks for your amazing journey

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