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Speaker 1: What if we told you it was possible to prevent, manage,

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Speaker 1: or cure all disease by the end of the century. Well,

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Speaker 1: the chand Zuckerberg Initiative is on an ambitious mission to

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Speaker 1: make that a reality. Go to CZI dot com or

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Speaker 1: follow them on social media to learn more about how

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Speaker 1: they're building a better future for everyone.

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Speaker 2: Hi.

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Speaker 1: Everyone, I'm Kitty Kuric, and this is next question. Approximately

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Speaker 1: ten thousand rare diseases affect as many as four hundred

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Speaker 1: million people around the world, and women leaders have been

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Speaker 1: truly at the forefront of bringing awareness and driving change. Today,

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Speaker 1: we have a privilege, the privilege to talk with four

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Speaker 1: of these women about the unique challenges in rare diseases

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Speaker 1: and patient advocacy and research and how they're resilt alliance

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Speaker 1: and ingenuity has really moved the needle toward treatments and cures.

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Speaker 1: I'm always excited to be here with my friend Tanya Simachelli. Tanya,

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Speaker 1: we've been here. This is our third year at the

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Speaker 1: She Media Tent, so she may be a film familiar

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Speaker 1: face to some of you. Tanya joined CZI the Chan

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Speaker 1: Zuckerberg Initiative in twenty seventeen and launched rare as one

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Speaker 1: two years later. Prior to that, she has over twenty

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Speaker 1: eight years of experience in science, policy and advocacy. Meanwhile,

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Speaker 1: I'm not doing this in order necessarily. Tara Zier, who

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Speaker 1: is at the end there, is the founder and president

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Speaker 1: of the Stiff Person Syndrome Research Foundation. Tara was diagnosed

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Speaker 1: with Stiff Person syndrome in twenty seventeen, so she's here

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Speaker 1: to talk about her experience as both a patient and

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Speaker 1: an advocate. Doctor Christina Miyaki is next to Tara. She's

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Speaker 1: the director of the Genetics Arrhythmia Program, an Associate professor

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Speaker 1: at the Baylor College of Medicine, and collaborates with patient

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Speaker 1: organizations to study these conditions and help search for treatments

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Speaker 1: and cures. She knows firsthand the value of patient centered research.

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Speaker 1: And finally, Susan Dando, the executive director of the Smith

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Speaker 1: Kingsmore Syndrome Foundation. She joined the foundation in twenty twenty two,

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Speaker 1: shortly after her daughter was diagnosed with this disease. Nothing

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Speaker 1: excites me more than talking to really smart, kick ass women.

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Speaker 1: So needlanden to say, I am in hog Heaven right now.

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Speaker 2: Give them around of applause.

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Speaker 1: It's a real privilege to be here with all of you,

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Speaker 1: and Tanya, let me start with you. I am always

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Speaker 1: struck by this statistic that there are over ten thousand

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Speaker 1: rare diseases impacting four hundred million people across the globe.

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Speaker 1: Tell us a little bit about why you created the

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Speaker 1: rare as one and how it supports patient communities and

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Speaker 1: accelerates why do I feel like I'm kind of looking backwards,

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Speaker 1: I don't know or yeah shares no, I'm good, Now

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Speaker 1: you're good, and how it supports these communities and accelerates research.

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Speaker 3: Thanks so much, Katie, it's so great to be here

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Speaker 3: with you again and with this amazing panel. So I

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Speaker 3: think really three things that really inspired the rare As

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Speaker 3: one project. The first is just the extraordinary unmet need

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Speaker 3: in the space, as you mentioned the four hundred million

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Speaker 3: people who are impacted around the globe, but also the

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Speaker 3: fact that there are fewer than fewer than five percent

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Speaker 3: of these diseases have any FDA approved therapies, so there's

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Speaker 3: just an unbelievable gap there. Secondly, while these diseases are

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Speaker 3: really understudied, they're incredibly important scientifically, so you know, the

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Speaker 3: vast majority of these diseases are actually caused by genetic

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Speaker 3: changes in single genes and as opposed to common conditions

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Speaker 3: that are often caused by tens, if not hundreds, of

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Speaker 3: different genes interacting with one another.

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Speaker 2: So when you study these rare.

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Speaker 3: Monogenetic diseases, you have this incredible window into human biology,

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Speaker 3: and if we can understand the function of these genes

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Speaker 3: and what's actually happening in people with these diseases, it

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Speaker 3: can often leads to insights into how we can also

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Speaker 3: treat common diseases, so they're really really important. And then

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Speaker 3: the third reason is actually really about sort of the

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Speaker 3: evolution of patient advocacy. So in the last twenty years,

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Speaker 3: we've seen this incredible proliferation of patient led rare disease

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Speaker 3: organizations like some of the ones that you just saw

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Speaker 3: in the film, who are really going beyond sort of

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Speaker 3: the more traditional advocacy work of disease awareness and just

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Speaker 3: raising general funds for their disease and actually driving the

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Speaker 3: research forward, like NASA Fitter says in the video. And

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Speaker 3: they're doing this by building really strong communities but then

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Speaker 3: really actively engaging researchers and clinicians in their disease areas

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Speaker 3: and actually going about the work of building you know,

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Speaker 3: clinical registries and biobanks and all these assets that are

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Speaker 3: needed to study their diseases. They're recognizing that no one

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Speaker 3: is going to do that for them. The incentives aren't there, right,

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Speaker 3: And so so that's really the third reason that there's

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Speaker 3: been this like extraordinary growth of these organizations. Some of

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Speaker 3: them are kicking ass, yeah, and doing this incredible work,

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Speaker 3: but there are no there were no major funders in

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Speaker 3: this space that were providing consistent sources and resources to

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Speaker 3: these organizations. And so I really said, you know, we

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Speaker 3: need to build a program that really supports these organizations

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Speaker 3: in this work if we're serious about, you know, our mission,

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Speaker 3: which is to cure, prevenor manage all diseases.

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Speaker 1: Yeah, and I feel like nobody is more passionate and

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Speaker 1: committed and driven than someone who has firsthand experience with

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Speaker 1: the disease. I know I felt that way when my

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Speaker 1: husband died of colon cancer. I felt like I have

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Speaker 1: got to do something about it. And then people with

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Speaker 1: living disease, living with disease, you know, they are so

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Speaker 1: highly motivated and Tara, and you know, I wanted to

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Speaker 1: ask you about stiff person syndrome because it's a rare

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Speaker 1: autoimmune neurological disorder that affects only four to five people

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Speaker 1: in a million. And now you run the Stiff Person

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Speaker 1: Syndrome Research Foundation. Tell us a little bit about your story,

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Speaker 1: because when I read it Tara, I thought, oh my god,

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Speaker 1: this woman has been through hell and she's still standing

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Speaker 1: and she's still fighting and doing something about it.

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Speaker 4: Sure, Katie, First, thanks for having me. I'm so excited

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Speaker 4: to be here. I really appreciate the opportunity, and I'm

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Speaker 4: happy to share about stiff person syndrome. I want to

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Speaker 4: speak to the name. The name does not do this

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Speaker 4: disease justice. It's disabled. People can have muscle spasms so

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Speaker 4: severe they break bones, dislocate joints, and result in life

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Speaker 4: threatening breathing problems.

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Speaker 2: People are just stiff.

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Speaker 4: So it's a little bit tough to people understand.

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Speaker 2: Well, we thought about that in the beginning.

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Speaker 4: Do we try to change the name or do we

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Speaker 4: just go after your better treatments? And I thought it

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Speaker 4: would be best to just go after better treatments.

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Speaker 2: Yeah.

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Speaker 4: So, my gosh, I had a very agonizing diagnostic odyssey,

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Speaker 4: which is not uncommon with rare diseases. Unfortunately, it took

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Speaker 4: me almost three years to get diagnosed. In twenty fourteen,

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Speaker 4: my former husband died by suicide.

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Speaker 2: My kids were eleven and thirteen.

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Speaker 4: At the time, and the stress and pressure I felt

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Speaker 4: to stay alive was unimaginable.

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Speaker 2: Two months later.

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Speaker 4: I was hospitalized with pneumonia, and then my health spiraled down,

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Speaker 4: and over three years I was experiencing really oddball frightening symptoms.

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Speaker 4: I was going from doctor to doctor in crisis mode,

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Speaker 4: knowing something was seriously wrong and trying to find answers.

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Speaker 4: I was mismanaged, mislabeled, told it was all in my head.

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Speaker 4: At one appointment with my primary care doctor, he told

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Speaker 4: me kind of leaned into me and he said, I

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Speaker 4: don't know why you're going from doctor to doctor. Take

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Speaker 4: this medication for anxiety and see me back in three months.

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Speaker 2: And like, I'm.

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Speaker 4: Professional, but I'm also not going to put up with that.

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Speaker 4: And I said, you know, I appreciate that, but if

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Speaker 4: you were in my shoes, you would be doing the

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Speaker 4: same thing.

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Speaker 1: And another doctor said, this is stress, and you said, yes,

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Speaker 1: I'm stressed, but I'm also sick.

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Speaker 2: Absolutely absolutely.

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Speaker 4: It got to the point in twenty seventeen, in March

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Speaker 4: I lost thirty in a month. Every day I was

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Speaker 4: standing on the scale and I was dropping. I was dropping.

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Speaker 4: I was dropping. I thought I was going to die.

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Speaker 4: I couldn't work. I was a dentist. I couldn't work anymore.

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Speaker 4: I couldn't drive, I couldn't take care of myself. I

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Speaker 4: couldn't take care of my kids. I had to hire

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Speaker 4: someone to live with us.

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Speaker 1: And so hard for your kids, I know, because they

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Speaker 1: had just lost their dad.

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Speaker 4: And I couldn't control it, and that seeing them so

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Speaker 4: stressed and not having control over that was horrible. And

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Speaker 4: I finally connected to the right doctors. I found a

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Speaker 4: wonderful primary care doctor who listened to me, who dismissed

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Speaker 4: the labels and referred me to a local neurologist where

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Speaker 4: I was diagnosed. He read the right tests, and I

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Speaker 4: landed at Johns Hopkins for my treatment. And it was

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Speaker 4: probably my third visit at Hopkins when my neurologists told

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Speaker 4: me that they had recently applied for a grant for

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Speaker 4: research at NIH and they were denied the grant because

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Speaker 4: there wasn't enough research to support.

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Speaker 2: Getting the grant right and you know, chicken her egg

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Speaker 2: right like, and that just blew my mind.

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Speaker 4: I'm like, if Hopkins can't get a grant, that's a

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Speaker 4: big problem.

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Speaker 2: And you know, here I was.

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Speaker 4: I remember just sitting there like sideways, you know, looking

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Speaker 4: at him, and I was, you know, in debilitating pain,

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Speaker 4: no good treatments, no cure, single mother. And it was

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Speaker 4: that moment where I knew I needed to do something.

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Speaker 2: And two weeks later we were on.

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Speaker 4: The news raising awareness, and then I knew we needed

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Speaker 4: to raise funds for research. So I started the Stiff

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Speaker 4: Person Syndrome Research Foundation and the latter part of twenty

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Speaker 4: nineteen with two main drivers, one to support research for

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Speaker 4: better treatments and a cure, and two to show my

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Speaker 4: children that no matter what hand your dealt in life,

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Speaker 4: you can still make a difference for people. That's what

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Speaker 4: gets me out in Dada.

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Speaker 1: And of course Seline Dion, when I think that was

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Speaker 1: well publicized, got the disease a lot of attention, which

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Speaker 1: was probably helpful.

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Speaker 4: Absolutely so grateful for her. That was like worldwide awareness

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Speaker 4: in a.

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Speaker 1: Day, rightly educated so many people very quickly. And Susan,

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Speaker 1: your daughter Carmen was diagnosed with something called Smith Kingsmore

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Speaker 1: syndrome or SKS when she was nine years old. Can

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Speaker 1: you tell me how she about this disease and how

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Speaker 1: she was ultimately diagnosed.

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Speaker 5: Yes, so we also had a diagnostic odyssey. Carmen was

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Speaker 5: diagnosed as autistic at four and had a lot of

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Speaker 5: the things that are relatively common in autism. She doesn't

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Speaker 5: speak very much. Most you to say, go away, mummy,

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Speaker 5: no thanks mummy. She has a sort of motown's struggles

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Speaker 5: to learn. But the big thing for us is that

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Speaker 5: she doesn't sleep, and by not sleeping, it's like she

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Speaker 5: really doesn't sleep. We would put her to bed at

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Speaker 5: seven thirty, she'd get to sleep at ten thirty. She

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Speaker 5: would wake up at one am and be awake, wake

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Speaker 5: up the whole house, destroy things. The more we tried

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Speaker 5: to get her to bed, the more violent she became.

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Speaker 5: She would hurt herself and hurt us. She would pass

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Speaker 5: out again at three am, wake up again at four

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Speaker 5: thirty am, and it would start again.

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Speaker 2: So this happened.

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Speaker 5: We would talk to the doctors and say, this is

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Speaker 5: what's happening in our house, and they would say, well,

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Speaker 5: you know, it's fairly common for artistic kids to not

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Speaker 5: sleep very much.

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Speaker 2: Is she napping during the day? And I would say no,

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Speaker 2: and they.

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Speaker 5: Said, well, you know, if she's not napping, she's probably

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Speaker 5: getting enough sleep. It's just part of who she is,

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Speaker 5: and she'll be okay. And I'm like, we're not okay.

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Speaker 5: I'm living with a living with a newborn, barely able

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Speaker 5: to function. My two other daughters are going to school

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Speaker 5: sleep deprived. But we really struggled to push back on

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Speaker 5: doctors with that. We almost became so tired it wasn't

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Speaker 5: worth the fight, but you know, we'd start reading. I

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Speaker 5: finally pushed for full genetic testing and we were sitting

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Speaker 5: with a genetic counselor and they said, well, she's actually

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Speaker 5: got this rare genetic syndrome was by a mutation to

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Speaker 5: the m tour gene called Smith Kingsmore syndrome. There's no treatments,

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Speaker 5: no cure, there's really not nothing you can do.

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Speaker 2: There is people, there's around three hundred and.

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Speaker 5: Fifty people worldwide that we know of, but they're like,

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Speaker 5: there is this foundation, the SKS Foundation. You probably should

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Speaker 5: look them up and so and we'll see you in

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Speaker 5: a year. So we went and looked them up, and

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Speaker 5: then everything made sense. There are these people all over

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Speaker 5: the world with sleep disorders, intellectual disability, limited communication and

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Speaker 5: we found our people and we found some hope.

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Speaker 1: When you hear these stories, Tanya, and how do you

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Speaker 1: connect the rarest One Initiative with people like this who

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Speaker 1: are desperate to try to find answers? And Christine, I'm

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Speaker 1: going to talk about your side of this as a

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Speaker 1: researcher and scientists, But what kind of infrastructure do you

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Speaker 1: provide that gives people some hope, connection and then they

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Speaker 1: can actually dream about the future? Yees.

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Speaker 3: So the heart of our program is actually our rare

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Speaker 3: is One network and to date we've actually funded nearly

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Speaker 3: one hundred patient led organizations advising like Susan's in Paris,

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Speaker 3: including Susan's and Terras, across multiple cycles, and we're not

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Speaker 3: just providing them with funding, but we're also building out

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Speaker 3: a whole capacity building program and helping them to build

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Speaker 3: their organizational capacity as you just heard, like neither Tara

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Speaker 3: nor Susan came to this by training right or on

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Speaker 3: purpose right and also scientific capacity building really helping them

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Speaker 3: do things like how do you build a scientific advisory

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Speaker 3: board for your organization, how do you work with researchers,

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Speaker 3: how do you work with industry to develop treatments like

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Speaker 3: so all of that we've packaged, and actually I should

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Speaker 3: point out Heidi and Andrew in the front row who

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Speaker 3: actually run the Rares one network and all the capacity

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Speaker 3: building for the program. And importantly we give them opportunities

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Speaker 3: to collaborate with one another, and I.

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Speaker 1: Mean it despite like maybe different diseases, but trying to

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Speaker 1: strategize and navigate the system. So I imagine that that's

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Speaker 1: been very helpful to you too, Susan and Terat, to

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Speaker 1: just know each other and try to navigate things. And

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Speaker 1: I imagine that rare is one for both of you

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Speaker 1: and for so many of these people who are struggling.

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Speaker 1: It's a godsend, isn't it.

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Speaker 2: Absolutely it is a game changer.

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Speaker 1: I wanted to ask Christina about her role because doctor Miaki,

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Speaker 1: you're coming at this from a clinical research perspective, and

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Speaker 1: doctor Miaki told me I could call her Christine. I'm

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Speaker 1: not being disrespectful. Tell us about the research you're doing

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Speaker 1: with something called Tango to deficiency disorder and what that is.

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Speaker 6: Thanks so much, Katie. It's really an honor to be

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Speaker 6: up here today with all of you. So I came

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Speaker 6: to work with Tango too because I'm a pediatric genetic electrophysiologist,

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Speaker 6: And that's just a fancy way of saying I'm a

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Speaker 6: heart doctor and I work with families who have conditions

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Speaker 6: that run in families that can lead to a cardiac

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Speaker 6: arrest or set in death. And as a background, every year,

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Speaker 6: approximately twenty three thousand children have a cardiac arrest and

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Speaker 6: of those over ninety percent don't survive, and of those

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Speaker 6: that survive, fifty percent don't get an answer. And so

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Speaker 6: that's what I do. I've dedicated my career and my

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Speaker 6: research to finding answers for these families and giving them

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Speaker 6: that diagnosis. One of them is tango tooths and so

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Speaker 6: working with these families, I've been able and through support

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Speaker 6: with the CZI, it's allowed me to identify a treatment

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Speaker 6: and you'll see some of the symptoms.

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Speaker 1: Yeah, we have a video actually about tango iiO that

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Speaker 1: we can watch and you can talk about at the

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Speaker 1: same time.

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Speaker 6: It's a rare disease that affects eight thousand and these

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Speaker 6: are some of the symptoms. Balance falling over, severe with

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Speaker 6: weakness and inability to get up, speech difficulties and cognitive delays,

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Speaker 6: difficulty walking to the point it progresses till you're in

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Speaker 6: a wheelchair and you can't speak. Two parents, Mike and

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Speaker 6: Kasha More started the foundation and in twenty nineteen I

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Speaker 6: began interviewing patients around the world and through this natural

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Speaker 6: history study, I identified that B vitamins prevent cardiac arrest

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Speaker 6: and some of the symptoms. So this is Phoebe. You

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Speaker 6: can see some of the symptoms, but children were dying

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Speaker 6: cardiac arrest and it had a high mortality rate. In

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Speaker 6: twenty twenty three, Phoebe was finally diagnosed and started on

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Speaker 6: B vitamins and you can see the difference within two weeks.

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Speaker 6: So she is now walking, she's got she can talk better,

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Speaker 6: she's got more energy, and she's a normal kid. And

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Speaker 6: it is through the B vitamins.

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Speaker 2: No child since has died.

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Speaker 6: And it's through funding through foundations like CZI that allow

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Speaker 6: us as physicians to work with organizations to find the

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Speaker 6: answers that ultimately are going to help the patient.

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Speaker 1: What if we told you it was possible to prevent, manage,

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Speaker 1: your cure all disease by the end of the century.

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Speaker 1: The Chans Zuckerberg Initiative is advancing biomedical research and leveraging

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Speaker 1: AI to change medicine for decades to come. By bringing

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Speaker 1: together science, tech, researchers, and engineers, they're building a better

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Speaker 1: future for everyone. Learn more at CZI dot com that's

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Speaker 1: CZI dot com or follow them on social media. How

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Speaker 1: critical is it for you as a scientist to actually

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Speaker 1: interface with the patient population, because I would think that

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Speaker 1: would be a no brainer. I don't know how scientists

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Speaker 1: did it without having that kind of exposure before.

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Speaker 6: I think that's what we need to change, and I

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Speaker 6: think that's what CZI is promoting and doing and funding.

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Speaker 6: We can't do what we do without the patients, without

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Speaker 6: these amazing mothers. They're so motivated to find answers. It's

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Speaker 6: only through collaborative and partnerships that we're going to push

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Speaker 6: rare disease discovery.

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Speaker 1: It seems crazy to me, it's just be vitamins. Did

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Speaker 1: you discover that, Christina? Yeah, I would say that's amazing

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Speaker 1: by the way. I mean, it's something something so simple

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Speaker 1: and accessible can be so life changing for those kids.

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Speaker 6: And I think it's as simple as paying attention to

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Speaker 6: the parents, listening to them, and then really taking that

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Speaker 6: into the science to find those answers that it really

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Speaker 6: starts at the patient.

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Speaker 1: I'm just curious as women who are impacted by these diseases,

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Speaker 1: both as patients and as caregivers, Can you describe the

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Speaker 1: impact of these diagnoses on your lives and the disproportionate

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Speaker 1: impact they have on mothers?

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Speaker 2: Sure?

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Speaker 6: I gosh.

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Speaker 4: For me personally, I think, at least to now, the

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Speaker 4: greatest impact was daring that diagnosse stick odyssey phase. I

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Speaker 4: was in the er.

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Speaker 2: I went to the er thirteen times, and.

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Speaker 4: My kids were witnessing that, and that was brutal, Like

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Speaker 4: I had to make a decision when I felt something

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Speaker 4: life threatening, I felt those symptoms, Do I risk dying

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Speaker 4: or do I traumatize my kids and call nine one wine?

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Speaker 4: And it was to the point where after the seventh

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Speaker 4: eighth time, I would call nine one Wine and I

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Speaker 4: would say, listen, I know this sounds crazy, but can

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Speaker 4: you not turn the sirens on when you come up

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Speaker 4: to the house Because my son told me later, Mommy,

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Speaker 4: every time I hear sirens, I feel really upset because

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Speaker 4: I think they're coming for you.

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Speaker 1: You also fit faced. I think TIRA the quintessential problem

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Speaker 1: that so many women face in the medical system, which

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Speaker 1: is relaxed or you know you're stress. Here's a pill

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Speaker 1: for anxiety. It's all in your head. Don't be hysterical.

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Speaker 1: And I think for many women, they're intimidated and embarrassed,

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Speaker 1: and they're made to feel shame for fighting their doctors

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Speaker 1: or being aggressive or going to another doctor. And so

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Speaker 1: I think as a mother, obviously your kids were worried

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Speaker 1: about you, but as just a woman, you faced a

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Speaker 1: lot of discrimination in the healthcare system.

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Speaker 4: Yeah, it's real, and people will tell you it's real.

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Speaker 4: I sat on a plane beside a cardiologist and we

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Speaker 4: happened to start talking and he's like, Tara, you know

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Speaker 4: it's real.

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Speaker 2: And I'm like, I know it's real.

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Speaker 4: So you know, it's one of those things too, where

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Speaker 4: I was on a call with an eer physician. It's like, well,

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Speaker 4: how do you show up, you know, as a woman,

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Speaker 4: and there's some you know, some bias there, and it's like, okay,

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Speaker 4: well don't be super emotional, Okay, well be professional.

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Speaker 2: It's like it's.

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Speaker 4: Difficult, right because I show up and I could tell you, Katie,

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Speaker 4: like I have a pain.

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Speaker 2: Level of nine and I'm not crying, and.

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Speaker 4: You know, it's really difficult to navigate. And I think

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Speaker 4: the key is you just have to push, You have

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Speaker 4: to do whatever it requires. I was showing up in

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Speaker 4: doctor's appointments, without appointments, just showing up saying I need

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Speaker 4: help because everything was on the line.

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Speaker 2: They had just lost their dad.

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Speaker 4: I'm like, I have to do and anything it requires,

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Speaker 4: And so all that noise went out the window.

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Speaker 1: Susan, what about you as a mom of and you

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Speaker 1: said you have two other children. I do, and so

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Speaker 1: I can only imagine how much pressure that is on

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Speaker 1: you and your whole family, right.

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Speaker 5: Yes, And I actually struggle a lot with the right

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Speaker 5: thing to do personally because my first reaction to common

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Speaker 5: being diagnosed I had just left a corporate job. I

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Speaker 5: wish I could say that my revelation was I need

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Speaker 5: to go and cure SKS, but it was actually, there's

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Speaker 5: no treatment or cure. My baby's going to need care forever,

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Speaker 5: and I don't know how long she's going to live.

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Speaker 2: No one can tell me.

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Speaker 5: So my first reaction was, actually, I need to get

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Speaker 5: back to corporate and be as much money as I

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Speaker 5: can so that so that there's money to take care

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Speaker 5: of my baby after I die. And that sits on

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Speaker 5: your chest all of the time through all of your work.

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Speaker 5: But it was I met the founders of the foundation

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Speaker 5: of the SKS Foundation, Kristen and Mike so Laser, focused

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Speaker 5: on science, so full of hope. They've just got the

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Speaker 5: CZI grant. They're like, we can do this, we can

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Speaker 5: drive towards treatments and a cure, and so I jumped

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Speaker 5: on board. But it is it's a struggle constantly because

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Speaker 5: you're thinking about taking care of your baby for the

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Speaker 5: next forty to fifty years, but also at the same time,

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Speaker 5: how do we take care of all of the SKS

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Speaker 5: and REP patients.

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Speaker 1: We're talking about funding of rare diseases, and Christine, I'm

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Speaker 1: wondering about you know, obviously there have been a lot

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Speaker 1: of changes in Washington. I'll leave it at that. Follow

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Speaker 1: me on Instagram, you'll hear a lot about it. But

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Speaker 1: I'm curious, Christina, about these cuts in NIH funding. How

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Speaker 1: you think they're going to impact rare diseases and help

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Speaker 1: people solve the mystery of so many of these things.

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Speaker 6: I mean, to be honest, the NAH has never put

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Speaker 6: rare disease, unfortunately, as a priority, and so for those

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Speaker 6: of us doing rare disease research, it's truly foundations like

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Speaker 6: CZI that have really helped US, and I think we

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Speaker 6: need to think about getting funding through other sources to

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Speaker 6: help us and think out of the box. I think

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Speaker 6: we need to work together and collaborate a partner, but

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Speaker 6: we do need to find other sources. We can't just

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Speaker 6: rely on the CCI.

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Speaker 2: So it is.

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Speaker 6: It is an unfortunate situation right now. But I'm hoping

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Speaker 6: that we can think positively and spread the word just

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Speaker 6: like you are doing about rear disease, so people can

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Speaker 6: see how important it is to partner together in the

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Speaker 6: future and not just rely on the NIH.

439
00:26:16,119 --> 00:26:18,919
Speaker 1: Sometimes, Susan, though, you can come up with a grant

440
00:26:19,240 --> 00:26:22,240
Speaker 1: and then it's such a laborious process. To you, all

441
00:26:22,320 --> 00:26:25,080
Speaker 1: of people in the scientific community who might be in

442
00:26:25,119 --> 00:26:28,320
Speaker 1: this audience knows how difficult it is to get funding

443
00:26:28,720 --> 00:26:31,520
Speaker 1: and how it can take months even years, right.

444
00:26:31,640 --> 00:26:34,600
Speaker 5: I mean, we had a game changing grant for the NIH,

445
00:26:34,800 --> 00:26:39,040
Speaker 5: which took us years of developing relationships with researchers, convincing

446
00:26:39,040 --> 00:26:44,040
Speaker 5: them to study SKS, funding through cake stalls, and asking

447
00:26:44,359 --> 00:26:48,080
Speaker 5: for five ten twenty dollars donations to fund research in

448
00:26:48,119 --> 00:26:52,200
Speaker 5: those labs, and we produced enough good data that they

449
00:26:52,240 --> 00:26:55,199
Speaker 5: put together a great grant proposal for the NIH for

450
00:26:55,240 --> 00:26:57,600
Speaker 5: two and a half million dollars, which is really small

451
00:26:57,720 --> 00:27:01,160
Speaker 5: change for some diseases, but for us, with three hundred

452
00:27:01,160 --> 00:27:04,680
Speaker 5: and fifty patients worldwide, that's a really big deal.

453
00:27:04,720 --> 00:27:07,840
Speaker 1: And so I think, what is the most status of

454
00:27:07,880 --> 00:27:08,520
Speaker 1: that funding.

455
00:27:09,880 --> 00:27:11,440
Speaker 2: We don't know. It's in process.

456
00:27:11,560 --> 00:27:13,960
Speaker 5: We hope that they will keep getting the remainder of

457
00:27:14,000 --> 00:27:18,120
Speaker 5: their funding. They're halfway through, but it's very uncertain, which

458
00:27:18,160 --> 00:27:21,600
Speaker 5: is really difficult for organizations. Now there are clinical trials

459
00:27:21,640 --> 00:27:22,480
Speaker 5: on hold.

460
00:27:22,520 --> 00:27:23,600
Speaker 2: There's research on hold.

461
00:27:23,640 --> 00:27:25,520
Speaker 5: It makes us, it makes it harder for us to

462
00:27:25,560 --> 00:27:29,959
Speaker 5: attract researchers in where the futures arenown and you know,

463
00:27:30,000 --> 00:27:32,960
Speaker 5: we get help from NIH scientists just giving us advice,

464
00:27:33,080 --> 00:27:36,119
Speaker 5: the best animal models to use, who else to collaborate with.

465
00:27:36,240 --> 00:27:40,320
Speaker 5: So so it is we might be small, but we've

466
00:27:40,320 --> 00:27:44,840
Speaker 5: had game changing support from them, and it's a difficult

467
00:27:44,880 --> 00:27:45,719
Speaker 5: time for all of us now.

468
00:27:45,760 --> 00:27:50,640
Speaker 1: The lack of respect for science is catastrophic in my opinion.

469
00:27:50,720 --> 00:27:54,639
Speaker 1: That's just my little editorial comment. Tanya, I wanted to

470
00:27:54,840 --> 00:27:58,960
Speaker 1: ask you, we're almost out of time about AI and Christina,

471
00:27:59,080 --> 00:28:04,040
Speaker 1: please chime in. You know, AI is such an exciting development.

472
00:28:04,080 --> 00:28:07,160
Speaker 1: I mean, I know there are perils to the technology,

473
00:28:07,200 --> 00:28:10,640
Speaker 1: but when it comes to health and wellness and medicine.

474
00:28:10,720 --> 00:28:13,400
Speaker 1: It is going to be such a game changer. How

475
00:28:13,400 --> 00:28:17,720
Speaker 1: do you see AI playing into the rare disease arena.

476
00:28:18,119 --> 00:28:21,800
Speaker 3: Yeah, it's actually a super exciting moment right now. I

477
00:28:21,800 --> 00:28:26,920
Speaker 3: think AI has the potential to actually transform every aspect

478
00:28:26,920 --> 00:28:30,840
Speaker 3: of rare disease, starting with diagnosis and that diagnognostic odyssey

479
00:28:30,880 --> 00:28:36,399
Speaker 3: that you just heard about, through drug development, through and

480
00:28:36,480 --> 00:28:39,400
Speaker 3: drug repurposing. That's something I'm super excited about.

481
00:28:39,440 --> 00:28:42,600
Speaker 1: I get so excited about that too. Where what give

482
00:28:42,640 --> 00:28:44,480
Speaker 1: an example of a drug repurposing.

483
00:28:45,080 --> 00:28:46,800
Speaker 2: So you just.

484
00:28:46,840 --> 00:28:51,400
Speaker 3: Saw David Fagenbaum on that video who talked about a

485
00:28:51,440 --> 00:28:53,360
Speaker 3: drug that was sitting in his pharmacy all along that

486
00:28:53,480 --> 00:28:58,440
Speaker 3: cured him, and David is now has now led the

487
00:28:58,480 --> 00:29:02,720
Speaker 3: development of a nonprofit organization that's dedicated to finding every

488
00:29:02,880 --> 00:29:06,760
Speaker 3: possible drug repurposing opportunity for every existing drugs. So there

489
00:29:06,800 --> 00:29:11,320
Speaker 3: are three thousand about FDA approved drugs. Most of those

490
00:29:11,320 --> 00:29:13,560
Speaker 3: have been approved for just one thing, and we know

491
00:29:13,800 --> 00:29:16,720
Speaker 3: they can most likely be used for other things because

492
00:29:16,720 --> 00:29:20,240
Speaker 3: biology is connected, right, Diseases are connected to one another.

493
00:29:20,800 --> 00:29:23,760
Speaker 3: So that's just an example of something that we're actually

494
00:29:23,800 --> 00:29:26,959
Speaker 3: investing in. We're actually funding this initiative, and so as

495
00:29:27,000 --> 00:29:29,200
Speaker 3: an example of how it's actually you know, we're actually

496
00:29:29,240 --> 00:29:32,360
Speaker 3: building a portfolio now of grants that really are about

497
00:29:32,920 --> 00:29:37,200
Speaker 3: helping to bring about, you know, apply generative AI to

498
00:29:37,640 --> 00:29:38,160
Speaker 3: rare disease.

499
00:29:38,240 --> 00:29:40,440
Speaker 1: Yeah. And I know when my sister was sick with

500
00:29:40,520 --> 00:29:45,640
Speaker 1: pancreatic cancer, part of her cocktail of medications included, weirdly,

501
00:29:45,800 --> 00:29:49,840
Speaker 1: the lidamide, which caused so many deformities if you recall

502
00:29:49,920 --> 00:29:53,160
Speaker 1: in the fifties. But there was a thought, I don't

503
00:29:53,200 --> 00:29:55,440
Speaker 1: even know if it's still being used, that it would

504
00:29:55,480 --> 00:29:59,080
Speaker 1: cut off the tumor's blood supply, just like in utero,

505
00:29:59,640 --> 00:30:02,680
Speaker 1: some of these limbs weren't growing because the blood supply

506
00:30:02,840 --> 00:30:04,840
Speaker 1: was cut off. So I think this is such a

507
00:30:04,880 --> 00:30:09,120
Speaker 1: fascinating area of research. Christine, are you jazzed about AI?

508
00:30:10,000 --> 00:30:11,800
Speaker 6: I can't even tell you. I think it is I

509
00:30:11,840 --> 00:30:13,760
Speaker 6: absolute grade. It's going to be a game changer.

510
00:30:13,840 --> 00:30:14,320
Speaker 2: We need to.

511
00:30:15,920 --> 00:30:19,920
Speaker 6: Figure out how we're going to utilize this. The massive

512
00:30:20,040 --> 00:30:24,640
Speaker 6: ability of AI to process enormous quantities of data and

513
00:30:24,800 --> 00:30:29,080
Speaker 6: take that data and then provide information back to us.

514
00:30:29,440 --> 00:30:32,040
Speaker 6: But we as humans will need to interpret it, right,

515
00:30:32,120 --> 00:30:35,680
Speaker 6: So we can't just give the information. I think, and

516
00:30:35,760 --> 00:30:38,400
Speaker 6: I agree with Tanya. Number one, I'll give you real

517
00:30:38,440 --> 00:30:42,440
Speaker 6: life examples tango to or SKS. It's going to take

518
00:30:42,480 --> 00:30:46,040
Speaker 6: that data from these patients, be able to process it

519
00:30:46,200 --> 00:30:49,160
Speaker 6: and then go into the medical records and identify others

520
00:30:49,160 --> 00:30:52,920
Speaker 6: so that people don't have this odyssey. Number two is

521
00:30:52,960 --> 00:30:55,440
Speaker 6: once we make that diagnosis and we know the genetic

522
00:30:55,480 --> 00:30:59,560
Speaker 6: defect SKS or tango too or stiff person syndrome, we

523
00:30:59,600 --> 00:31:02,000
Speaker 6: don't know, oh how it does that in the body.

524
00:31:02,320 --> 00:31:07,440
Speaker 6: This virtual cell AI has so much potential for AI

525
00:31:07,600 --> 00:31:10,680
Speaker 6: to start looking for answers rather than us in the

526
00:31:10,720 --> 00:31:15,600
Speaker 6: basic science lad boiling for years. And then third, I

527
00:31:15,640 --> 00:31:17,000
Speaker 6: think it's going to be able to help us find

528
00:31:17,040 --> 00:31:21,760
Speaker 6: treatments rather than me spending hours interviewing everybody. AI could

529
00:31:21,800 --> 00:31:24,720
Speaker 6: potentially do that and identify B vitamins faster than me

530
00:31:25,120 --> 00:31:28,440
Speaker 6: and find those cures and those repurposing of drugs. So

531
00:31:28,480 --> 00:31:29,440
Speaker 6: it's an exciting time.

532
00:31:29,640 --> 00:31:33,160
Speaker 1: I'm very excited about AI, at least in the medical space.

533
00:31:33,240 --> 00:31:37,280
Speaker 1: I know, like AI guided colonoscopies, it's all about colon's

534
00:31:37,360 --> 00:31:40,640
Speaker 1: You guys, I'm sorry, but it is calling Cancer Awareness

535
00:31:40,720 --> 00:31:43,040
Speaker 1: Month and I just wanted to give a shout out

536
00:31:43,200 --> 00:31:45,960
Speaker 1: if you're forty five or over, you need to get

537
00:31:45,960 --> 00:31:50,440
Speaker 1: a screening. Ladies and gentlemen. Women are as diagnosed as

538
00:31:50,480 --> 00:31:53,840
Speaker 1: often as men, and we're seeing a disturbing number of

539
00:31:53,920 --> 00:31:56,320
Speaker 1: young people. I'll be talking about this tomorrow with the

540
00:31:56,360 --> 00:32:00,160
Speaker 1: microbiome and gut health of young people being diagnosed with

541
00:32:00,240 --> 00:32:03,400
Speaker 1: colorectal cancer. So if you're forty five or over or

542
00:32:03,440 --> 00:32:05,800
Speaker 1: you know someone who is, please help them get screen

543
00:32:06,080 --> 00:32:06,440
Speaker 1: Thank you.

544
00:32:06,680 --> 00:32:07,520
Speaker 2: Okay, Lmura.

545
00:32:07,960 --> 00:32:10,400
Speaker 1: Before we go, where do you think is the most

546
00:32:11,640 --> 00:32:17,160
Speaker 1: exciting opportunity to advance rare diseases right now? Obviously there's

547
00:32:17,200 --> 00:32:21,960
Speaker 1: some headwinds with government funding, headwinds with this lack of

548
00:32:22,040 --> 00:32:26,840
Speaker 1: respect and appreciation for the credibility of science, which is

549
00:32:26,920 --> 00:32:29,720
Speaker 1: so bizarre to me. But tell me what are you

550
00:32:29,800 --> 00:32:33,040
Speaker 1: most excited about, Tara when you think about the future.

551
00:32:34,520 --> 00:32:39,440
Speaker 4: Exactly what she said, So the AI, the potential there,

552
00:32:39,600 --> 00:32:43,320
Speaker 4: the drug repurposing as well. I mean thinking that there's

553
00:32:43,400 --> 00:32:45,480
Speaker 4: a drug sitting on a shelf right in front of

554
00:32:45,520 --> 00:32:48,520
Speaker 4: you when you go and CBS that could give you

555
00:32:48,640 --> 00:32:51,600
Speaker 4: quality of life. I think that's that's super exciting to

556
00:32:51,680 --> 00:32:55,520
Speaker 4: be exploring that. So I applaud David Fagenbaum for doing

557
00:32:55,560 --> 00:32:59,560
Speaker 4: what he's doing. And also, I'm going to state the

558
00:32:59,600 --> 00:33:03,280
Speaker 4: obvious at least I think it's obvious investing like CZI

559
00:33:03,480 --> 00:33:08,800
Speaker 4: has in patient advisory groups and understanding the value in

560
00:33:08,920 --> 00:33:13,960
Speaker 4: these groups. And you know, people who are here are

561
00:33:14,400 --> 00:33:18,440
Speaker 4: personally impacted by the disease. There's a level of commitment

562
00:33:19,320 --> 00:33:25,240
Speaker 4: that's so incredibly high, and we're able to break down silos,

563
00:33:25,560 --> 00:33:27,880
Speaker 4: We're able to bring together the best of the best

564
00:33:27,920 --> 00:33:33,280
Speaker 4: to accelerate research, and we won't stop until we get

565
00:33:33,320 --> 00:33:34,440
Speaker 4: a cure and are better.

566
00:33:34,640 --> 00:33:35,600
Speaker 2: Yeah, better treatment.

567
00:33:35,680 --> 00:33:37,719
Speaker 1: And Christina, do you think women are better at that

568
00:33:37,800 --> 00:33:45,160
Speaker 1: than men? Hashtag just saying absolutely, Well, it seems like

569
00:33:45,240 --> 00:33:47,600
Speaker 1: women are the people who are really stepping up in

570
00:33:47,640 --> 00:33:49,360
Speaker 1: our current climate in general.

571
00:33:49,440 --> 00:33:50,840
Speaker 2: Right, absolutely.

572
00:33:50,920 --> 00:33:54,280
Speaker 6: I mean I think that as women, as mothers, we

573
00:33:54,480 --> 00:33:59,720
Speaker 6: have compassion, the ability to listen when it's important, and

574
00:34:00,320 --> 00:34:06,520
Speaker 6: the as females, your girlfriends, your friendships, the collaboration that's key.

575
00:34:07,160 --> 00:34:12,000
Speaker 6: We put collaboration first before self promotion for the long

576
00:34:12,120 --> 00:34:14,920
Speaker 6: term the gain, which is the patient outcomes. And I

577
00:34:14,920 --> 00:34:17,840
Speaker 6: think for me, the most exciting thing about the future

578
00:34:18,160 --> 00:34:21,440
Speaker 6: is you know, for me, I've found it a foundation

579
00:34:21,840 --> 00:34:24,400
Speaker 6: and it's called I hop kids and it's going to

580
00:34:24,440 --> 00:34:26,600
Speaker 6: help find answers. But this is the way it's going

581
00:34:26,680 --> 00:34:29,120
Speaker 6: to do it, is to find more diseases that are

582
00:34:29,120 --> 00:34:31,120
Speaker 6: causing sudden death and doing it together.

583
00:34:31,600 --> 00:34:33,839
Speaker 1: When my husband was six, Susan I used to say,

584
00:34:33,880 --> 00:34:39,319
Speaker 1: nothing is more motivating than fear and desperation when you

585
00:34:39,600 --> 00:34:44,200
Speaker 1: see someone you love suffering, and my heart goes out

586
00:34:44,239 --> 00:34:48,720
Speaker 1: to you because it must be so challenging every day

587
00:34:48,920 --> 00:34:51,680
Speaker 1: to see your child suffering.

588
00:34:51,719 --> 00:34:55,520
Speaker 5: You join this community, though, and there's a puff and

589
00:34:55,560 --> 00:34:59,839
Speaker 5: it's not just hope. It's really strategic science, so drag

590
00:35:00,120 --> 00:35:02,720
Speaker 5: purposing to just put numbers on it. I can't afford

591
00:35:02,719 --> 00:35:05,600
Speaker 5: a clinical trial. It costs tens of millions of dollars

592
00:35:05,640 --> 00:35:07,960
Speaker 5: to do clinical trials for a brand new drug. But

593
00:35:08,040 --> 00:35:11,200
Speaker 5: I can raise one hundred thousand dollars a year to

594
00:35:11,320 --> 00:35:14,440
Speaker 5: test drugs in fruit flies, the humble fruit fly.

595
00:35:14,560 --> 00:35:16,080
Speaker 2: I can do that, and if.

596
00:35:15,920 --> 00:35:19,160
Speaker 5: We see results in sleep, or in seizures or in

597
00:35:19,239 --> 00:35:24,600
Speaker 5: violent behavior, we can transfer that to Gusto syndrome, to

598
00:35:24,960 --> 00:35:28,239
Speaker 5: other disorders of sleep issues that have size issues. Because

599
00:35:28,280 --> 00:35:31,560
Speaker 5: these are FDA approved drugs. So if we see some

600
00:35:31,640 --> 00:35:36,440
Speaker 5: positive results and we have willing and active pediatricians and parents,

601
00:35:37,280 --> 00:35:41,600
Speaker 5: there's no harm in trying vitamin B, right, So there's

602
00:35:41,719 --> 00:35:44,600
Speaker 5: just so much strategic stuff we can do to Frankly,

603
00:35:44,840 --> 00:35:48,120
Speaker 5: I spend all my life thinking about Carmen's disease, but

604
00:35:48,400 --> 00:35:50,719
Speaker 5: I spend my time with these people thinking about like,

605
00:35:51,000 --> 00:35:53,480
Speaker 5: how are we going to get these treatments done?

606
00:35:53,640 --> 00:35:57,200
Speaker 1: And there's so much overlap I think in rare diseases

607
00:35:57,360 --> 00:36:03,320
Speaker 1: because anyway, Tanya, But you know, if people want to

608
00:36:03,400 --> 00:36:08,440
Speaker 1: learn more and you know, and and support what CZI

609
00:36:08,600 --> 00:36:11,839
Speaker 1: is doing, support these communities, how can they do that?

610
00:36:13,360 --> 00:36:15,359
Speaker 3: Well, you can go to rareswe dot org and learn

611
00:36:15,360 --> 00:36:17,920
Speaker 3: more about our program and all the groups within our

612
00:36:18,000 --> 00:36:23,160
Speaker 3: rares one network. You can, you know, I think part

613
00:36:23,200 --> 00:36:25,680
Speaker 3: of this is just awareness understanding that rare diseases are

614
00:36:25,719 --> 00:36:29,000
Speaker 3: not rare collectively, they're incredibly common. Probably everyone in this

615
00:36:29,120 --> 00:36:31,239
Speaker 3: room knows somebody. You may not know that they have

616
00:36:31,280 --> 00:36:33,400
Speaker 3: a rare disease, but they have a disease that probably

617
00:36:33,440 --> 00:36:37,440
Speaker 3: is rare. I just want to say in terms of

618
00:36:38,239 --> 00:36:41,080
Speaker 3: what I'm hopeful about, I mean, my BET's on the patients.

619
00:36:41,239 --> 00:36:44,279
Speaker 3: Maybe that's obvious, but I just you know, we have

620
00:36:44,440 --> 00:36:48,480
Speaker 3: seen extraordinary progress, and we've been running this program for

621
00:36:48,520 --> 00:36:50,479
Speaker 3: five years like I said, we now have one hundred

622
00:36:50,480 --> 00:36:51,520
Speaker 3: groups within our network.

623
00:36:51,719 --> 00:36:53,960
Speaker 2: Our first cohort of thirty groups.

624
00:36:54,480 --> 00:36:56,239
Speaker 3: There's a if you go to our website, you can

625
00:36:56,280 --> 00:36:58,040
Speaker 3: find a report about those groups.

626
00:36:58,440 --> 00:36:59,920
Speaker 2: Collectively, those thirty.

627
00:36:59,719 --> 00:37:05,000
Speaker 3: Organizations engaged more than three thousand researchers and clinicians in

628
00:37:05,040 --> 00:37:09,839
Speaker 3: their diseases, and they have actually supported more than three hundred.

629
00:37:09,520 --> 00:37:10,920
Speaker 2: And fifty research studies.

630
00:37:11,400 --> 00:37:15,000
Speaker 3: These studies would not be happening if these groups did

631
00:37:15,040 --> 00:37:19,720
Speaker 3: not exist. The power is in these organizations to actually

632
00:37:19,840 --> 00:37:22,919
Speaker 3: drive the research forward, and it won't happen without them,

633
00:37:23,440 --> 00:37:27,040
Speaker 3: and so it is what gives me absolute hope and motivation.

634
00:37:27,640 --> 00:37:31,160
Speaker 3: And the patient groups are important, not just because no

635
00:37:31,160 --> 00:37:33,600
Speaker 3: one's more motivated. They're going to run through walls to

636
00:37:33,640 --> 00:37:36,680
Speaker 3: find treatments for these diseases, there's no question, and that's

637
00:37:36,760 --> 00:37:41,239
Speaker 3: incredibly motivating for researchers working with these organizations. But we

638
00:37:41,440 --> 00:37:44,200
Speaker 3: have to also recognize they have you've just heard it

639
00:37:44,239 --> 00:37:47,680
Speaker 3: on this panel. They have deep expertise and experience in

640
00:37:47,719 --> 00:37:51,360
Speaker 3: their diseases and that is fueling the research. It's helping

641
00:37:51,400 --> 00:37:55,719
Speaker 3: the researchers solve these diseases. And we have countless examples

642
00:37:55,719 --> 00:37:58,719
Speaker 3: now researchers coming to us and sharing with us how

643
00:37:58,760 --> 00:38:02,360
Speaker 3: working with these communities has actually transformed their research. In Christina,

644
00:38:02,880 --> 00:38:04,800
Speaker 3: the case with Tengo Too is an example that it

645
00:38:04,880 --> 00:38:08,960
Speaker 3: was patients observed that when their kids were on vitamins,

646
00:38:09,000 --> 00:38:11,600
Speaker 3: they didn't seem to have these the worst effects of

647
00:38:11,600 --> 00:38:13,880
Speaker 3: that disease, which got her to do the natural history

648
00:38:13,880 --> 00:38:16,000
Speaker 3: study and try to sort of figure this out. So

649
00:38:16,080 --> 00:38:20,879
Speaker 3: it's really about these partnerships between patients and researchers and clinicians.

650
00:38:21,080 --> 00:38:24,319
Speaker 1: That is what gives me hope so well, and their

651
00:38:24,440 --> 00:38:29,080
Speaker 1: joint expertise well and these are obviously smart cookies up here,

652
00:38:29,120 --> 00:38:32,040
Speaker 1: by the way, Susan's a rhodeschalar. I'm always so impressed

653
00:38:32,080 --> 00:38:39,760
Speaker 1: by that. Not that long ago anyway, Tara, Christina, Susan, Tanya,

654
00:38:40,280 --> 00:38:42,920
Speaker 1: thank you so much for the work you're doing and

655
00:38:43,640 --> 00:38:47,080
Speaker 1: we're holding you in our hearts as you continue to

656
00:38:47,200 --> 00:38:50,839
Speaker 1: work and make progress towards better treatments and hopefully one

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Speaker 1: day God willing a cure. Thank you, Thanks for listening everyone.

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Speaker 1: If you have a question for me, a subject you

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Speaker 1: want us to cover, or you want to share your

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Speaker 1: thoughts about how you navigate this crazy world, reach out

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Speaker 1: hear from you. Next Question is a production of iHeartMedia

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Speaker 1: and Katie Couric Media. The executive producers are Me, Katie Kuric,

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Speaker 1: and Courtney Ltz. Our supervising producer is Ryan Martz, and

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Speaker 1: our producers are Adriana Fazzio and Meredith Barnes. Julian Weller

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Speaker 1: composed our theme music. For more information about today's episode,

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Speaker 1: go to the description in the podcast app, or visit

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Speaker 1: us at Katiecuric dot com. You can also find me

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Speaker 1: wherever you listen to your favorite shows. What if we

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Speaker 1: told you it was possible to prevent, manage, your cure

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Speaker 1: all disease by the end of the century. The Chans

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Speaker 1: Zuckerberg Initiative is advancing biomedical research and leveraging AI to

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Speaker 1: change medicine for decades to come. By bringing together science,

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Speaker 1: tech researchers, and engineers, they're building a better future for everyone.

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