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 honor our grandest, most mysterious inheritance: our brains.
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• My Quest to Cure Prion...
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[@lowlyworm9323]

the fact that both she and her husband just were like ‘well I guess we gotta go get PhDs and research it ourselves’ is insane

[@fizzles5]

Reminds me of Lorenzo’s oil

[@jauxro]

at the same time, the only sane option :o

[@Wandfigur]

I can't get my boyfriend to use thrush medication when I ask him to and her husband became a brain scientist for her. This blew my mind!

[@hooman9554]

literal power couple

[@ericreed4535]

Admirable 👏.

[@ZachQ-bx8hn]

At a glance, this seems like a quest to save herself, but with such a complex disease and so little time, a cure most likely won't be developed in her lifetime. Dedicating the last decade of her life to save people she will never know is heroic.

[@YassenChapkanov]

Technologies develop exponentially. Just a decade ago we struggled much more to understand shapes and interactions between proteins. Now we have better imaging, better algorithms and better tools for manipulation. We have a long way to go but we are moving faster and faster.

[@stevesellers-wilkinson7376]

I couldn't agree more... so brave and inspirational!

[@GratiaCountryman]

@@YassenChapkanovThat isn’t necessarily true in the development of medicine. There’s so much trial and error involved. What works in a Petri dish doesn’t necessarily work in animals. What works in animals doesn’t necessarily work in people. Prions are especially difficult. There have been crowdsourced computational work on prions for decades and they still haven’t cracked it. What applies to computer technology doesn’t necessarily apply to medicine.

[@YassenChapkanov]

@@GratiaCountryman You are correct in pointing out the difficulties of medicine but that doesn't really affect my point. I am using technology in the broader sense. Functional methodologies in any field are more likely to be adopted which on one side provides us with deeper understanding of the challenges ahead of us and on the other head gives us a new basis for innovation on top of what we know works. Simply put as a collective the more we learn the better we become at learning which doesn't necessarily applies to individuals but we multiply so that covers the difference. Another thing to mention is that technologies and their results don't follow the exact same path. Paradigm shifts are the product of sustainained technological growth that doesn't produce much utility until all necessary pieces are in place and suddenly an entire new perspective of how to interact with reality is revealed. I believe we are very close to such event in the field of medicine even though you are right that the road seems very long. Maybe I am too optimistic but judging from our progress in quantum chemistry it is very likely protein 3d analysis and manipulation will experience a boom in the next decade.

[@sunla]

I hope she does save herself. She's a hero.

[@callabeth258]

As a pharmacist this is one of the diseases that truly terrified me when I learned about it. That it can be contagious (mad cow and kuru) or genetic as in Sonia’s case. But also that we have yet to find any way to stop it. Cancer sucks but we’re so much better at treating it now. As we are at a lot of other diseases contagious, sporadic, or genetic. Prion disease is one of the few diseases we have nothing to help it in any way.

[@Bowsby1]

I too went down the rabbit hole of prion diseases and I am so intrigued and terrified at the same time, I'm especially scared of chronic wasting disease and it's ability to spread through saliva, urine, blood, and feces. Hunting is huge here in the southwest and although there haven't been any confirmed transmission of CWD from cervids to humans they have proven that the cervid version of PrPsc is capable of corrupting the human PrP in transgenic mice who have the human form of the protein. I know it's absurd to assume that it's "alive" but the way that CWD collects in a deers saliva and causes them to salivate excessively in the later stages of the disease I think resembles rabies in a way.

[@stellarwind1946]

Brain diseases are always the most difficult to treat, including cancer. Glioblastoma for example has a very poor prognosis for survival and is resistant to most conventional cancer therapies.

[@Hollyucinogen]

​@@Bowsby1Creutzfeld-Jakob disease for me. Rabies is up there, too.

[@stevenbrown6076]

@@stellarwind1946 The owner of the company I worked for got that. He hid it from everyone until he couldn't. They did brain surgery on him to try to remove it, which had some fascinating and terrible side effects, like him no longer being able to recall proper nouns. He only lived for about three months post surgery. It was ruthless.

[@bethanyann1060]

Fatal familial insomnia prion disease is terrifying too.

[@2ontheroad78]

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]

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.

[@christinaalvarez332]

My heart breaks for you and your family. I lost my father to CJD two years ago.💔💔💔💔💔💔 I applaud Sonia for her bravery and determination to help herself and others. The future looks bright.

[@kassidydavis5565]

It’s absolutely horrible. I hope you and your family have the support you need to make it as least difficult as possible given the circumstances. Lots of strength and hugs from a distant internet stranger. We went through it with my grandma last year

[@inorganicproduce]

I am so sorry - I hope we can find a cure soon. ❤

[@hemantchaudhary7605]

What was the symptoms please tell me

[@franciskalambayi3171]

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

[@nettewilson5926]

That’s very wise

[@ElysetheEevee]

Very true. I'm honestly obsessed with this idea... to an unhealthy degree sometimes.... As someone with severe, mostly genetic, and biological mental illness, I used to joke about them being "terminal." That's kind of what led me down that road of thought.

[@Kennclarete]

Her response to everything is amazing. Even getting IVF with genetic testing to have children.

[@CAMSLAYER13]

​@ElysetheEevee life is a terminal condition. Happens to everyone. there's never enough time, so do what you can while you can.

[@FortexVize]

Of course but is that really something "healthy" people think about? I would never be doing that and I wasn't back when I was a kid and I thought I was healthy. Now at 22, knowing I have an AVM that most likely will take my life "earlier than others" it is a topic I have to think about, deal with and find peace with. I am doing exactly that, it doesn't change anything for me I prefer trying to live my life to the fullest but I would have not expected "healthy" people thinking about that they *could* get sick and die young or sudden.

[@EmilyAlton-q8m]

Her humour at 'rumours of my death have been greatly exaggerated' is honestly so admirable. I don't know if I'd be able to make jokes when there's a chance you will die a silent, forgetful death, but her optimism is so infectious and clear. Honestly, good luck to her and the team.

[@zzodysseuszz]

Isn’t that a movie reference

[@GratiaCountryman]

@@zzodysseuszz That quote traces back to Mark Twain. He read his obituary in a newspaper and quipped “Reports of my death are greatly exaggerated.” Reports has been subsequently misquoted as rumors.

[@pickupmygroceriespeasant]

Wtf does "forgetful death" mean

[@omnipotentfish3404]

@@GratiaCountryman Thank you! I've seen this meme so many times but never bothered to look into it's origin! I was actually laughing out loud when she referenced it, and also kind of annoyed that the audience didn't laugh :L

[@idiotburns]

@@omnipotentfish3404People that see the meme first, dont really have the capacity to ever understand the meme. Its research at that point, lol

[@Dreamscape195]

What I find so incredible is her willpower to DO SOMETHING about it. I think I'd be broken and sit around wallowing in depression. (I'm not that strong of a person). She has not only fully dedicated herself to becoming the expert in the field (an amazing and admirable thing to do for any person), but is also living her life to the fullest (having kids! safely!). She's just... incredible. Her work is going to save SO many people in the future and she and her husband forged this path on their own. Genuinely one of the most uplifting and inspiring things I've listened to in years

[@roisinrowan1341]

hey, don't be so hard on yourself. yes, she is incredible - but she also had the financial backing to get a phd, the support of a loving husband, and the kind of intelligence many of us don't possess. and that's brilliant, i'm so glad she has those things! her privilege in these regards doesn't diminish her remarkable accomplishments at all, or change the fact that she's got such a horrific disease. but don't think that you would fail to do something like this just due to 'willpower'. all the willpower in the world isn't enough sometimes, and i'm sure you're stronger than you think :)

[@jin_cotl]

Me too. I too would be depressed. I was depressed some months ago and just got out of it, so I can testify that I too will be depressed if I found out about this

[@jin_cotl]

@@roisinrowan1341but still, she had the willpower to go on

[@caseypenk]

@@jin_cotlShe had to make her own willpower by turning her suffering into purpose. Willpower isn’t offered up on a platter somewhere.

[@sainttheresetaylor2054]

​@caseypenk why are some people more able to turn suffering into purpose?

[@moniquecardellio6564]

I lost my dad to the sporadic form of this disease. It was hardest experience to witness my dad go through this. This woman is incredible and strong.

[@hemantchaudhary7605]

Your father had sporadic fatal insomnia how did you know this and also please can you tell me what is the first symptoms. Please tell me it is a matter of life and death.

[@lium24]

@@Hannari-xt6nr stop spamming you troll

[@hemantchaudhary7605]

Please tell me the symptoms.

[@miac5328]

​@@hemantchaudhary7605familial insomnia isn't sporadic but prion disease can be (very very rare) types include CJD mostly! But it seems you might have health anxiety?

[@whitewall2253]

Sporadic Fatal Insomnia is weird, it's one of the rarest conditions on earth.

[@athmaid]

Speedrunning PhDs in this field is an absolutely crazy achievement in itself, and it was just a means to and end for them. I hope their drive pays off and she gets to combat her own disease

[@alexrogers777]

Yeah seriously, how tf does a person get a PhD in 2.5 years?

[@nicofelie]

@@alexrogers777maybe it’s not a full medical PhD but like she already had a masters from law so she did 3 more years of school? I actually have no idea. Despite having a degree I still really don’t get how universities work 😂

[@cactusrose55]

Totally agree.

[@l.w.paradis2108]

​@@nicofelie With graduate degrees, they could go to night school to get their foundational science courses done, work in labs and get credit for it, then apply to a PhD program. They do not need a second Bachelor's or Master's in bioengineering first. Universities have the option to admit people like them with "deficiencies" in a few core courses that they can make up during their first year. THANK GOODNESS

[@nicofelie]

@@l.w.paradis2108 wow thank you! I’m glad I finally got an answer 😂 was so confused on this!!! I’m glad schools do that it does make way more sense. A lot of the classes they require for degrees are nonsense extra bs anyway

[@aszechy]

What really gets me about this is what it must be like to live every day with this hanging over your head. Every bad day, every dizzy spell or headache or lapse of memory you have, you must be wondering - is this it? Learning to live your life and not go crazy constantly looking for signs is no small feat.

[@JodBronson]

At a certain point, you will learn how to live and just day by day. How do I know? I battled Leukemia for 2 years and now I'm in remission but it's not over yet. If not careful, it will strike back, and have to repeat it. During my 2 years, my heart got weakened and now I just live day by day. Sometimes I no longer have the will to fight. In the beginning, I was weak but very strong mind. Now, I just live day by day and to the fullest, and if I die, it's OK.

[@nataliaalfonso2662]

This is how a lot of us with chronic illnesses live. I’ve been so sick for so long and while I’ve known since birth I had a wonky heart and needed surgeries for it, just last month after feeling sooooo horrific for so long they discovered that I had survived a stroke…. Without any treatment. I went for the MRIs bc my migraines were so so so so bad…. I thought maybe I had had a recent stroke or god forbid a tumor… But no. Recent migraines are just terrible migraines, though they can be part of Wallenberg syndrome and also be TIAs…. But apparently I had had a stroke longer ago. Not only white knuckled survived it with literally no treatment….. Multiple doctors refused to test for it. Multiple hospital stays. And this was after an infection so bad that also no one believed that it left me with meningitis. And still Stills Still. I try to talk to people and they think I have some hidden agenda

[@JodBronson]

@@nataliaalfonso2662 - Your Migraines could be simple but very hard to detect or discover. Go to a BIG PARK with lots of trees. Turn your Cell Phone off completely or any device with WiFi and Bluetooth. If anyone is with you, they must do the same. About ONE + HALF Hour later, your migraines should stop and no more. If that is the case, you are being affected by WiFi + Bluetooth Radiation.

[@barneyronnie]

Sword of Damocles...

[@KarmatheCorgi]

Everyday I wonder "Is my health going downhill again? Is this my new baseline? Will I ever be able to do X again." Living with a terminal (or in my case highly likely to be terminal) disease is... scary. But, sometimes you just... stop in the middle of a rain shower and take a deep breath and go "I'm alive, I'm breathing" But... I'm not yet bedbound, but I do wanna live for my animals.

[@samgray49]

I know two people who have died of prion disease. One was my friends father who had genetic Cruezfeldt-Jakob Disease, he participated in a highly experimental clinical trial, and it extended his life by around 3 years, he ultimately developed COVID-19, and his daughter signed off on a DNR and in one of his moments of lucidity signed a advanced directive, in that he did not want to be put on life support at all. He ended up dying of COVID-19 instead of CJD. Likewise, a person at my local playhouse who I knew due to my work there, developed sporadic CJD, he developed early symptoms in february and was dead by the end of April. It was horrifying to see him slip away in no time. Upon my friends father autopsy, his brain was Swiss cheese and further genetic testing showed the mutation he had was mistranslated, it's why he hung on for so long and died in his 50's. The treatment which was a targeted immune drug, it also had the side effect of damaging his white matter. The trial didn't work, but it gave him some time.

[@MSuyay]

What does it mean that the mutation was mistranslated?

[@yukifuki1621]

Translation is the process where mRNA gets "translated" into Proteins by combining amino acids. I guess in his case the mutation would have led to a much earlier death, but the "wrong" translation of the faulty gene sequence (=mutation) lessened the impact of his condition, which allowed him to live longer

[@alexeyamosov664]

Sorry for your loss... how old was this person with sporadic CJD? Excuse me if I ask stupid questions, really

[@MYROTE.]

You gave me a quote for life: "we have to heed the call to protect what we can't rebuild." All the best with your research. You're not just working for yourself but all of mankind. Keep at it!

[@kikibann32]

Beautiful, yet bittersweet TED. She will go down in history. This must be one of my favorite TEDs. She is so humble and I am hoping she can accomplish her dreams 🙏

[@kassidydavis5565]

My grandma died of CJD in October and it was the most horrendously heartbreaking earth shattering thing I couldn’t have even imagined. It was watching her waste away mentally and physically so quick we couldn’t even get an answer while she was still truly there. It was getting a diagnosis that had absolutely zero hope and knowing she was going to suffer until she finally died. It was me being absolutely heartbroken and at the same time glad it was finally over and feeling guilty for having wished she would die already. It was me having to make the decision to go home and say goodbye to her while she was alive (even though she didn’t recognize me) or wait until she died so I could go to her funeral. I chose to tell her goodbye and her last words to me were “You’re leaving!?!” I had a dream about her dying again last night. Prion diseases take the literal life out of people and then force them to live as zombies while their families watch knowing there is zero chance for anything short of suffering for their loved one.

[@MagpieMalone]

Did she take the covid shots?

[@xobrynn90]

@@MagpieMalone that has nothing do to with it. did you watch the video????

[@MagpieMalone]

@@xobrynn90 no

[@plantstho6599]

damn dude. I'm sorry anyone has to go through such a thing. I'm trying to help the world advance out of this cul de sac it seems to be stuck in, but I can't seem to manage my own life.

[@hemantchaudhary7605]

Can you please tell me the symptoms please tell me.

[@jordanswierkowski6819]

I clicked on TED this am to see what's new... this talk is on the homepage. In one hour I am going to my dad's best friends funeral. He passed from CFJ disease. I had never ever heard of a prion until a week ago. The universe works in mysterious ways that I just watched this. You are an inspiration and I feel deep down that your cure will come soon! Thank you for your work

[@tylermajewski9711]

KZbin Algorithm that heard you talking about it The universe brought you here to learn the truth

[@AmandaComeauCreates]

Living with Nail Patella Syndrome as a diagnosis since I was ten has been so damned hard. I'm 36 now, and my kidneys are showing signs of decline - one of the outcomes the syndrome inflicts on those who carry the genetic error. I could not imagine living with Prion disease hanging over my head. The nightmare that must have been to watch happen to her mother - and knowing her kids could be forced to watch it happen to her. Heartbreaking. My syndrome carries many physical challenges present and future. Very few are aware it even exists - and every person who has it has it a little differently and with great variability. They get diagnosed across the ages - some much later on in life and others very young. It all depends on your particular case. I resonated with this researcher's description of being dealt a bad hand. I struggle everyday with the darkness of depression because the diagnosis hangs over me. It has been easy for friends and online commenters to say, dont let it get you down, just live your life, but its like a guillotine. I struggle to imagine anything good in my life because trying to attain traditional adult goals like renting or buying my own place is so damned impossible. I can't even have that in my life, and I'm always thinking that before long my quality of life will dip further and further and further and what is the point of waiting for that? I only wish rare illnesses got the incredible funding and attention and problem solving energies that military spending and posturing politically gets. I wish people could suffer less and live more and that life wasn't about just getting buy. I wish many things were different. I grieve. Honestly - with every breath I feel like I grieve for the couldve beens, and I although I try so hard to stop its a feeling that has such weight and crushing momentum to it that it seems impossible to pause. I dont believe in God, but I imagine she might. And I hope I'm wrong for her sake and that she gets the divine intervention she needs for a breakthrough. Perhaps it will lead to helping others with different conditions too. A silver bullet for all of our genetic problems. A little dream I have for her. And her kids.

[@YunxiaoChu]

Wow

[@ксения-е1ж2т]

Привет, не совсем понятно почему вы думаете, что у вас прионная болезнь?

[@AmandaComeauCreates]

@@ксения-е1ж2т Um, I dont. I relate to the speaker as someone with another rare disease. Not sure what part of my comment made you think that I think I have Prion - I didn't say that I did? First paragraph compares my experience?

[@ксения-е1ж2т]

​@@AmandaComeauCreatesНаверное это переводчик так перевел

[@sierra3981]

This is a beautifully written comment. Thanks for sharing and I wish the best for you.

[@passerby4507]

Thr strength she has is utterly incredible, knowing there's a ticking time bomb literally in your head and defying it with all you have.

[@Anne--Marie]

Sonia and Eric are heroes, real heroes. As the oldest child, it pained me to bury my sister before she was three and my brother who was fifty five. I didn't have the grit to do the research because the heartache was too strong. I really admire this couple.

[@caliisfkinbored]

I hope your days are full of joy and love despite the hardships you have to relive for the rest of your life. I truly wish that you feel your siblings’ love every time you wake up and before you go to bed. You deserve nothing but comfort and I’m so sorry you had to deal with such a loss. You have all of my love and best wishes❤️

[@Anne--Marie]

@@caliisfkinbored That is so sweet. Thank you

[@ava4689]

How do you know it was CJD/Prions in your family? It sounds like your sister passed from something else. Did your brother get diagnosed?

[@Anne--Marie]

@@ava4689 I was referring to the pain of burying two younger siblings, not the disease.

[@ava4689]

@@Anne--Marie I’m sorry for your losses. I was asking about the disease. You implied that your siblings had it/died from it. Which is why I’m curious if your brother got diagnosed.

[@FayeVert]

I watched my dad die, slowly, from Alzheimer's disease, which is also caused by misfolded proteins, but there's still debate about whether it should be considered a prion disease or related to prion diseases. I would sign up for gene editing or protein removal TODAY if it meant eliminating or even reducing my risk of Alzheimer's, or it meant some other family wouldn't have to suffer through that brutal disease in the future.

[@MegF142857]

SIL just passed from early on-set Alzheimer's at 61 years old. They say unlikely to be genetic, but she was diagnosed in her 50s.

[@pretendingToBe]

My mom has started showing signs of cognitive decline and i'm in the process of researching things that can be done to prevent it. To my dismay, I found that lots of literature suggest not a lot can be done but i found a ray of hope. I highly reccommend the book *The End of Alzheimer's: The First Program to Prevent and Reverse Cognitive Decline* by dr Dale Bredesen md. He goes into detail what his reasearch shows is a whole plethora of processes(genetics, sleep quality, adequate blood values of vitamins and minerals, potential exposure to toxins, hormone imbalance, blood glucose levels, thyroid etc) that can tip the scale toward or against cognitive decline and Alzheimers. He developed a multifactorial therapeutic program called reCODE to guard against it and even reverse it. Amyloid plaqe is supposedly just a body response trying to protect neurons on the brain during inflammatory processes in the body, but becomes the telltale sign of Alzheiners, when the inflammation becomes chronic and the plaque keeps on building up.

[@foxythecutefox2564]

Pregnancy or breastfeeding reduces it naturally but it's from fetal cells and young y cells too I believe

[@farnazseif6459]

Who knows what kind of risks gene editing or protein removal could pose.

[@Olivia-W]

Alzheimer is complicated. It may be tied to insulin resistance (cerebrovascular insulin receptors are defective in Alzheimer's, also look at the insulin degrading enzyme and B-amyloid plaque).

[@micheleonel5068]

My cousin died of hereditary CJD about five years ago. We went on a family ski trip at Christmas time, and she was extra exhausted and not her usual self. She was diagnosed within a couple of months and passed away in May, leaving behind a husband, teenage daughter and two younger kids. It was beyond painful to watch her waste away before her childrens’ eyes. God bless this woman for dedicating her life to a cure.❤

[@AlysonArchibequeDavis-kv1bx]

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. 🙏

[@lizmullaney305]

My cousin who was fit and active and living life with gusto was suddenly ill and disappearing. It was CJD. He passed in weeks. His family donated his body to researchers looking for the cure/ prevention. We are still awaiting word if it was acquired prion (mad cow) or genetic. But looking back how my healthy, strong,vibrant grandfather suddenly disappeared into a black hole and was gone in three months, I am prepared. If your loved ones are currently being taken from you by this disease, consider looking into donating remains to research to find a cure. (I believe you have options to donate just the brain if that’s something you’re more comfortable with.) If your loved one was diagnosed with dementia or Alzheimer’s but it’s progressing at an unnatural rapid pace, have them tested for CJD. I have a strong feeling many cases go undiagnosed.

[@5600hp]

That’s so crazy and devastating

[@byzantineladybug9471]

Oh my goodness, I’m so sorry for the loss of your cousin and grandfather. Do you have a sense of what caused his illness? Is ‘mad cow’ actually spreading? Why isn’t there more public awareness about this?

[@theexplosionist2019]

@@byzantineladybug9471 Its theorized millions are incubating vCJD from the infected beef scandal.

[@sapphirestrm]

Just love the blending of soul, poetry, biology, life, and longing. And so appreciate the efforts of Sonia, Eric, and their team to figure out and cure the prion disease which can lead to other cures for other diseases. *Grace* is exactly the right term here.

[@PowellMunroHolzner]

Scientific achievement and sage advice in 16 minutes---hands down the best TED talk I've ever watched

[@yoyoschmo1]

I have dementia strong in my family. I’m a physician and did a genetic panel and 108 dementia genes were tested and they were ALL normal. It was astounding but also so relieving. I know it’s not foolproof but my relief revealed the subconscious level of stress of the possibility of carrying on a disease. She knows she has it and devoted her life to it. Props to her!

[@evslone]

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.

[@TheMrmoc7]

“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.

[@hstochla]

I didn’t realize that quote was that profound until now. It applies to so many situations such as this one.

[@NoNameAtAll2]

what does licked mean here?

[@Victual88]

@@NoNameAtAll2 It means the odd's are set heavily against her, (being diagnosed with a 100% fatal disease)

[@Drakid13Re3kt]

Means you've already lost​@@NoNameAtAll2

[@lullanie]

This woman is the epitome of strength, courage and grace.

[@Allegra11]

What an incredible woman. I wish her all the luck in the world in finding a cure

[@TheClownThatKnowsNoSmile]

One last play to help people, its a death mission, but if she finds the cure in time to help others, its gonna be heroic. Godspeed miss.

[@oh_my_science]

Sonia is an angel from heaven. Positively radiant, remarkable, & truly inspiring. I adore her.

[@prnobbs3262]

Outstandingly moving and inspirational. And sad. This woman is who we all could be if we lived with open heart and mind. Yes, we wish you luck. And our thanks for sharing.

[@caseypenk]

I just have to say, dedicating one’s life to a future one may never see is deeply and profoundly noble and generous.

[@AyyRalphy]

That’s so neat. I applaud you. I actually reversed my gastroparesis since I was constantly medically gaslighted. It was horrible. Being ignored for 2 decades and I went through every scan possible just to be told ‘i’m normal, it’s in my head’. One surgeon Dr Irfan in Houston who is a bariatric surgeon took me seriously and decided to open me up. My gallbladder was deformed aka intrahepatic meaning it was placed in the subcapsular region in the liver. Inside. Encrusted. Never descended down normally as your organs in its respective area during gestation. 2 decades of horrendous nausea/dry heaving so called ‘ibs’ gone within 2 years. Gastroparesis also reversed itself with me trying to link everything together with a help of a Japanese doctor. Wish you the best. You got this. My life was a horrible chit show.

[@muranyaki2201]

Omg thank you so much for sharing! My mom has had gastroparesis since 2013 and she was also medically gaslit! She can't keep any food down and has to be fed nutrition through a port in her chest called TPN. She did have her gallbladder removed as well but I'm not sure about the other stuff! I'm so glad you were able to heal and reverse your condition! I've seen firsthand what an awful disease it can be!

[@roisinrowan1341]

my best friend has gastroparesis, and was also medically gaslit! for years they were told they have 'somatic symptoms disorder', aka it's all in their head. they now have a feeding tube because they physically can't eat meals. luckily they have doctors who believe them now, but it took them years of being medically abused and the damage that did to them both physically and mentally is lasting. it's awful that there's so many similar stories, but you're not alone in what you've experienced

[@j-h-123]

Wow, she is so inspiring, intelligent, and well-spoken. All the best to her and her husband. Loved this Ted Talk.

[@Katkit91108]

Protect Dr. Sonia at all costs. What an amazing human being. ❤

[@Nooorrriii]

This is amazing, I’ve done 2 research projects on CJD and knew there was variant CJD but knew it was rarer than sporadic CJD, so it’s insane to know someone has it and is studying it before she succumbs to it.

[@mach1nefan]

The best talk I’ve ever seen. A well deserved standing ovation, go Sonia and everyone at Broad!

[@mpoharper]

My daughter’s father in law passed away from Creutzfeldt-Jakob. It was heartbreaking. It was not detected until the train wreck occurred. Praying for a cure.

[@cs1983]

Praying for a cure is one way to tackle this. Another way is to do what Sonia does. I think Sonia's way is more promising.

[@mpoharper]

@@cs1983 praying for a cure is not incompatible with supporting Sonia’s approach.

[@cs1983]

@@mpoharper Sure, you can do both. However, I'm pretty sure that the chances for a cure increase the more time and resources are spent on research. So people, please spend less time praying and use the time you gain for doing research - or supporting research by advocating for it and raising money. THANKS!!! 🙏

[@mpoharper]

@@cs1983 ​there is nothing prayers and good thoughts do to compromise research support. As a cancer patient I really welcome research and good thoughts. Awareness is key to finding a solution. Sonia’s approach has great merits!

[@lizmullaney305]

@@cs1983Lecturing people on how to respond to and emotionally process a loss is the coldest, most unhelpful narcissistic trait ever. Just stop now.

[@kevinwilliams3272]

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. ♥♥♥♥♥♥♥♥♥♥

[@minakshi2412]

I can relate to her in so many levels. Being diagnosed with one of the rarest connective tissue disorders in it's worst possible form even before hitting 30..I cursed all Gods for being so harsh on me. But in one way, it helped me get out of a marriage which might've otherwise suffocated me had I stayed in it for a few more years..The earlier the better. It gave me a new purpose in life..Yes, I am someone with this rare condition which badly affects the quality of my life, but it gave me so much more! And I realised how much my family loves me!!

[@snowworm4601]

I think the final note wraps this up very well. We should be supporting this as much as we can, you and everyone you know may not be at risk of Prion disease but the advancements in the medical field that could come from curing this disease could have a much bigger effect than you may imagine.

[@AustinCarl-n8d]

Lost my uncle a year ago.. he was one of my best friends and mentors in my life.. seeing the way CJD progressed in the hospital as none of us knew, was the most otherworldly experience ive ever had. This is a beautiful story, and hope they are able to find an answer so treatments are available.

[@mlimrx]

What an incredible and brave woman and such a wonderful and devoted partner she has. Truly and inspiration!

[@Onel756]

So very brave . I don’t think I would have her courage . To redirect her life studies to advance a cure . What a remarkable person . We need so many more like her .

[@maxe493]

It’s incredibly heroic especially knowing that she probably won’t be the one to benefit from her discovery’s but she is still dedicating the little left of her life to help solve it.

[@jonlizsam]

I watched my mother decline from early onset Alzheimer’s disease as a child myself. She had Alzheimer’s before it was a household word and generally known to the public. She was a lawyer and so smart and kind. Losing her like that marked my life. I became a nurse. I hope that you can find a cure for prion disease, for yourself and so that no child would have experience what you and I went through. May heaven help your every effort.

[@SpaceMan650]

I’m so glad they’re talking about this, I’ve studied prion desease and basically know everything about it. The exact desease she probably has is familial Creaztful-Jakob-Desease (CJD) which is inherited, the random desease she’s talking about is sporadic CJD which is 1/1000000, it’s not like men or women or pregnant women or people with cancer have a higher chance to get this desease. We’re all equal. This desease made headlines in the 80s-90s from bovine spongiform encephalopathy (BSE) also known as mad cows desease, if you eat infected cow meat you get variant CJD (vCJD). The reason this is so deadly and I’m treatable is because prions are technically not alive. 9000C of sustained heat for several hours had a possibility to destroy the prion but mostly disable it. They can survive minimum of 2 years in the wild/soil. But the worst part, 1/4000 people currently have it, it’s just they don’t know it because prions have an incubation period of up to 10 years or beyond. Especially if you ate meat in the 80s. The only way to stop this is to get a molecule that can attach to cell protein to prevent the single prion from taking and infecting that prion killing the cell. The most recent test is PRN100 tested on 6 and was partly successful, although all the 6 patients died. Things like strokes or even stress. I just realised I am literally being a wiki clone rn.

[@kennethgray6693]

She actually has fatal familial insomnia. I know her, and they started a foundation specifically for FFI.

[@tammiklusewitz7141]

@@kennethgray6693 Is that what it is? I was wondering as she described her mother's rapid decent but I didn't hear her say it.

[@SpaceMan650]

@@kennethgray6693that does make sense, although it would be nice if she also did stuff for CJD as more people suffer, but I do get it.

[@__ru_]

i thought she was talking about huntingtons

[@venus4724]

Appreciate the personalised wiki lesson.

[@leopardscanfly]

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

[@benceseger7748]

I admire this woman. Survival is our strongest instinct, the most played game in the world is one of "don't die". Please Sonia, don't die. You're a treasure for this world a true light. I hope you can live long enough to see your own disease be cured and watch others go through these future treatments.

[@MissMarvel_]

Damn, this one got me emotional. It seems unlikely that one could solve this disease before losing their life to it. I hope she can, but even if it can't happen, it will be amazing how much she did and hopefully inspire many others.

[@CaptBrightside89]

I've worked with CJD, it's a genuinely terrifying and awful disease. The people who continue to fight for research, treatments, advocacy and support for patients and their families are legit heroes.

[@pluribus_unum]

Courage. Generosity. Kindness. Thank you for this talk!

[@有明-p4f]

I'm a 30 yrs patient undergoing examinations of ffi; having read about stories of Sonia&Eric for so many times recently, I get inspired and cheer up again and again. I've developed syndromes of a little bit dysphagia and ataxia, along with confusion, short memory loss and severe concentration impairment. My insomnia is getting worse, leading to low vigilance in daily life, and together with it the hypertension is becoming hard to control. I guess my autonomic system is waning. Don't know if I may catch up with any trial, but I hope everyone in the world healthy and happy.🎉

[@ZijnShayatanica]

I'm so sorry you're experiencing that... That the train wreck may be in motion. Do your best to take care of yourself & enjoy the moments you can. I'm glad the planet had you in it, even if it isn't as long as you were promised. Thank you for the well-wishes... My health sucks, but I'm managing & trying to find happiness. 💖

[@nettewilson5926]

😢. That’s brutal.

[@hemantchaudhary7605]

What type of symptoms did you notice first.

[@davidddo]

stay strong and make sure to not have a lot of regrets

[@hemantchaudhary7605]

@@davidddo brother do you know about sporadic fatal insomnia what is the symptoms of this fatal disease first notice by patient.

[@enckidoofalling2883]

I had a patient with Prion disease in Utah. The assumption was goat brains caused it. Time will tell. The guy had a huge extended family.

[@MK-ih6wp]

How long ago?

[@lizmullaney305]

I do hope this was a long time ago. Assumptions are not scientific and lead to millions of misdiagnosed/undiagnosed (and therefore improperly treated or untreated) patients every year.

[@cherenkov_blue]

Her words are so eloquent as to be a poem. I hope a cure can be found, not just for CJD but for any disease that causes such suffering.

[@melbournewolf]

you are an amazing person and add to my hope for a better way forward for all

[@InHitchWeTrust]

She and her husband are my absolute heroes! I follow their story from beginning. I REALLY (!) hope the cure for FFI will come on time! This is truly horrific disease.

[@firedawn]

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

[@minhdieuhoang]

The fact that both of you guys switched career like that is so insane. On the other side, I love your speech so much!! I hope the best will come in your journey. Thank you for your contribution to this world ❤️

[@peggleblastlover]

I’ve been working in a neuropathology lab for a bit of time now studying a variety of different neurodegenerative diseases (including prion disease). There is so little we know, but we’re getting closer to possible cures and fast. Especially considering the new advancements with artificial intelligence, it’s becoming easier and easier to recognize hallmark signs of these kinds of diseases in the brains of post-mortem brains. Hopefully we will find proper targeted therapies for these horrifying diseases soon! I am optimistic.

[@wendyclark4574]

As a nursing student learning about prion disease I was fascinated on how this normal protein can go rouge. Then as an Operating Room Nurse dealing with tissue possibly infected with CJD it terrified me. I wish I had had the intelligence to go into biomedical research; I applaud this husband and wife for their career changes. I can't imagine living with a known genetic 'jeopardy' card like prion disease. It's as bad as fatal familial insomnia. I will watch this teams progress with great interest.

[@juli3836]

my heart aches for her. prion diseases are horrifying. i wish her the best❤

[@sm4sh3d]

Very interesting topic and exciting approach to the cure of the disease.

[@custosdesign1053]

Videos like this are why we need another level so we can smash that “Love” button!

[@klila16]

She’s a beautiful person, courageous. I love that her and her husband are able to do this and have their beautiful family and still live their lives meet personal and professional goals. I really wish them success.❤

[@delljohnson6560]

FFI is a shocking disease that I have witnessed first hand. Praying your research develops the drugs to prevent this hideous disease from activating. 🙏

[@hemantchaudhary7605]

Please tell me the first symptoms occur.

[@lium24]

@@hemantchaudhary7605 why are you denying every person thats saying that they know what its like

[@hemantchaudhary7605]

@@lium24 i want to know the symptoms of fatal insomnia. Its sporadic form is also have the same as genetic.

[@allcatz]

​@hemantchaudhary7605 I have read that in a family with FFI, the first symptoms were pinpoint pupils and profuse sweating.

[@hemantchaudhary7605]

@@allcatz what is the symptoms of its sporadic form.

[@jin_cotl]

She’s such a sweet person to be around, I wish that she will find a cure ❤

[@GilbyMinaj]

She’s so powerful. How many lives has she touched and inspired, I know she has inspired me and I’m so happy I ran into this video. Whether it be if things are meant to happen for a reason or not .

[@alyssastewart738]

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]

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]

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

[@fionamainey7686]

There is a book called The Family that Couldn't Sleep which details this prion disease through an Italian family. So fascinating and terrifying.

[@Lemonz1989]

I know of two people who d*ed of prion genetic disease. They were sisters and neighbors of my grandparents. I'm a biology nerd and knew of prion diseases before they were affected, but I didn't know that it could be genetic until that point. I totally understand her point of wanting to know if she has the mutation or not. I'm the same way. I NEED to know these things to get peace in my mind, even if the knowledge is negative. I won't lie and say that it wouldn't scare me, but the lack of knowing is so much more scary to me, just living life never knowing if I'm going to be afflicted by a terrible illness or not. If I know beforehand, I can make preparations. I have type 1 diabetes, which is 100% fatal as well without treatment, but we have a lot of treatments for it now, so life is okay, even though it's difficult to deal with. Just the fact that I know I have a big risk of future complications, gives me the ability to organize my life to deal with them if I end up having issues in the future. I've chosen my education and job so I know i can work, even if I will suffer from complications and I take care of my body as much as possible so I reduce my risks as well.

[@TPRKH]

I was looking into FFI not too long ago and your name was in one of the articles I read. You are a truly powerful individual. Best wishes to you.

[@simonsays5094]

can't respect this woman enough, she and her husband are incredible

[@jackpeters4930]

Reminds me perfectly of this quote ‘I know of no better life purpose than to perish attempting the great and impossible. The fact that something seems impossible should not be a reason to not pursue it. That's exactly what makes it worth pursuing. Where would the courage and greatness be if success was certain and there was no risk.’ Nietzsche

[@prince_8bit]

"There is no version of me where you subtract the mutation and hold the rest constant." As an autistic person, this is exactly what autistic advocacy groups have been trying to say. We have been trying to undo the harmful, HARMFUL rhetoric hate groups like Autism Speaks has been pushing out for years, and I know there are differences in the conversation on prion disease and a disability like autism, but I think there can be some similarities in how people approach them. If I was rich and/or famous enough, I wish I could do a TedTalk on how curing autism should never ever be a goal, or prevention. Because autism isn't life prion disease where it affects one portion of yourself. Autism is not 100% of my personality but it 100% affects 100% of my life. Trying to "subtract" it would make it impossible to "hold the rest constant." And it took a lot of autistic friends and advocacy to learn how to undo the self-hate in myself.

[@hailiebaker6923]

Her story moved me to tears. Thank you for dedicating your life to this research ❤

[@Americarunsonduncan]

I resinate with this so well. My mom has hereditary ALS. I have a 50% chance of having the mutation. I have not gotten tested. I hope we find some type of cure for all genetic diseases. It is scary knowing that NOTHING can be done.

[@b3dubbs72]

Same, I got tested though. I have the genetic mutation. Apparently it isn’t as much of a 1:1 correlation as it was originally thought to be.

[@Dingleburry37]

I wish all the best for this powerful woman and her family. I hope her research bears fruit in her lifetime, because she deserves to be able to enjoy her life. So inspiring

[@gorogorotodoro]

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

[@tragedium]

I see so much strength in her, and what she has done and started, very few people would in my opinion. Wish you and your team great success in your work!

[@DCGreenZone]

Abstract A method of dissolving or disrupting pre-formed or pre-deposited amyloid fibrils and/or inhibiting amyloid formation, deposition, accumulation, or persistence in Alzheimer's disease, prion diseases and/or other amyloidoses in a mammalian subject is disclosed. In the method a therapeutically effective amount of nattokinase is administered.

[@SlavTiger]

The breakdown of beta amyloid is a current experimental treatment, unfortunately my grandmother doesnt qualify for it, im worried about her.

[@sburn1919]

My uncle participated in the trial and is receiving the treatment, it greatly accelerated his decline and there is evidence of stroke that wasn’t there before

[@derpingflamingo]

reading about her and her huabands story back in high school inspired me to be a scientist. Glad to see that they are still pushing forward. Im currently suffering in grad school

[@Nazinsky]

Good luck. You’ll help so many.

[@PolinaLim-d9s]

It gave me goosebumps for real

[@shanexm3062]

This was genuinely a beautiful speech. Incredible woman--I wish there were more people like her.

[@eewilson9835]

You are so cool. I live where people still eat Prion disease deer meat, and its a journey to continue learning in life, even when there is a perfect brain, life is all mission focused.

[@neiliewheeliebin]

I don't know if another animals prion disease can cause it in us but I certainly wouldn't be eating it. It's theoretically possible to get an animals cancer from eating it

[@dr.michaellittle5611]

This was absolutely outstanding from both a clinical and humanistic viewpoint.❤👏👏

[@lorettademaio4334]

Wow you and your family are amazing! Very inspirational, thank you for sharing and may God Bless the work ahead of you.

[@debrawucik826]

What an extraordinary woman with an exceptional will and drive.

[@Apostatedyke]

This has gotta be my favorite TEDxtalk. Rooting for her

[@segamai]

Wow wow wow. What a beautiful and optimistic presentation, in another life she certainly could have been a poet

[@DHPanthony]

Considering the population is growing, and more people are living longer, it makes diseases, especially of the elderly, more common. The goal of a longer life is to spend more time with loved ones and do what you like for longer, but that requires a better quality of life. Prionic diseases like Alzheimer´s disease (AD) and others take that away from us. Deciding to do something for the benefit of the future, going through all the steps of higher education, and abandoning one´s job is quite inspiring. I am going for a master´s in molecular and cell disease, and my goal is to also do something about prionic (molecular) diseases, so this inspires me. Thank you for being so dedicated.

[@ellaelliott4415]

FFI horrifies me…I learned about it a few years ago. I’m so grateful we have people who are determined and dedicated to curing prion diseases. It gives me hope

[@PopeVancis]

Isn't FFI different from a prion disease? FFI or Familial Fatal Insomnia is related to the deterioration of the brain due to the inability to sleep, unless this inability to sleep is caused by prions?

[@LeBatteur]

@@PopeVancis Yes, FFI is a prion disease that causes a person to be unable to sleep until they die from the resulting complications.

[@DarkJediPrincess]

@@PopeVancis The inability to sleep seen in FFI is, indeed, caused by prions.

[@DarkJediPrincess]

FFI isn’t the only prion disease that’s genetic. CJD and other TSEs can also be genetic. Sonia hasn’t specified _which_ prion disease she has, so don’t assume one particular kind of TSE over another.

[@timmatheny-lo9ze]

Thank you for your Wisdom on this very important issue. Praying for strength, knowledge and peace on your journey. My wife was diagnosed in 2017 with Alzheimer’s or what can be called FTD. That journey changed my life in so many ways. She passed in 2022 at 56. My focus has been on learning all I can about it, and share with others. I have a history in my family, my father in his early 70s and both his sisters and their mother. Before my wife’s condition we where focused on my family,but life as we know is unpredictable. I’ve changed a lot in my lifestyle. Eating right, exercise daily,staying positive and intermittent fasting. We are all on a journey called life and knowledge in so important.

[@anonymousecalling]

Spent quite some time working in the UKs prion labs, over a decade ago. They used to worry that many here would get sick for carrying the mutation, especially when 2 single carriers got together, as bovine infected material was potentially in pretty much everything, but it never happened. Some of the first mice were CRISPR edited and it took 15 years just to figure out why the side effects occurred. Nasty disease. Good luck in your quest.

[@warriormamma8098]

We need more humans like her. Trying to do all they can to make the world a better place instead of spending hours scrolling Tik Tok, gaming, getting high. To do something meaningful and productive with their lives.

[@skydivekrazy76]

I won't wish you luck. I'll go one better and wish you the power of human society. We are God like when we unite. I wish that for you.

[@MerryAnne2598]

This has affected me in the most beautiful way, restoring my faith in people, when some in my family have betrayed and lied and tried to crush my spirit.And here are these two people who have been met with the worst are doing their best to help and enjoy life in the process. It also makes me appreciate even more the friends and family who stood by me and mine. God bless you!!! Please, God, guide them to find a cure! ❤️🙏❤️

[@brandonm8901]

Prions absolutely terrify me

[@JosChaMab]

She is unbelievably admirable. I am so in awe of individuals like her who wield their strengths at times of such grief and sadness.