- [Announcer] "Your Fantastic Mind," brought to you in part by Sarah & Jim Kennedy.

(bright music) (bright music continues) (contemplative music) - [Jaye] ALS takes movement, not mind.

- I was 64 when I was diagnosed.

- [Jaye] But inside Emory, patients and scientists are pushing back.

- [Speaker] That challenge brought us closer together.

- I want you to take in the biggest, deepest breath you can.

Blast it out hard.

You're done.

Awesome.

- [Jaye] Genetic therapy.

- [Speaker] This represents a positive detection of the ASO.

This is a control antibody.

- [Jaye] A breakthrough idea aimed at ALS.

- Let's bring ourselves to this present moment.

- [Jaye] And a surprising pilot study that trains compassion to reduce suffering for patients and caregivers.

- They suffer from ALS too.

- We also don't know what to expect.

There's still a lot of uncertainty about how the disease is going to progress.

- [Speaker] Their body is going through these changes where they're losing independence.

And if we can reduce suffering through that, that's really something we should be doing.

- With one potential intervention, we could potentially correct a majority of the protein abnormalities.

This is the closest I've ever been to being so close to actually taking something from the laboratory and giving it to a patient.

I've never been this excited.

- Welcome to "Your Fantastic Mind."

I'm Jaye Watson.

here at Emory's ALS Center in Atlanta, patients, families and scientists are confronting one of the most devastating diseases we know.

This week, we take you inside ALS, what it does, how people live with it, and how innovative research and care are changing what's possible.

- [Staff] Claudia Bell.

(gentle music) - [Speaker] ALS is a disease.

It's called a neurodegenerative disease.

It's a disease that happens out of the blue.

And what happens is you get weak.

- Good morning.

- [Jonathan] It's a disease of the motor system or the voluntary motor system.

And we have motor neurons in our brain and motor neurons in our spinal cord.

- So about 10% of ALS is genetic.

But in about 98%, we really don't know why people get ALS.

- They'll come in: "I couldn't turn the key in my car."

Or "I tried to get out of the bathtub, and I couldn't do it.

My legs were weak."

- And how did things kind of evolve since then?

- I noticed that the blower got heavier, and then I was having to go sit down.

And just got mad, saying, "Why is everything feeling so heavy?"

- We're happy to be here.

- [Jaye] ALS is always progressive.

- The average survival is about two to five years with ALS.

- There's some people who die in 10 or 15 years, but that's relatively rare.

And there are other people who die in one year or 18 months.

And that's also relatively rare.

- [Jaye] Neuromuscular neurologist Jonathan Glass is the founder and head of the Emory ALS Center.

- Average age of onset is about 58 to 60 years old and literally comes out of the blue.

Most people tell me: "I've been healthy all my life.

I don't even go to the doctor.

How could I possibly get this disease?"

Have you fallen down at all?

You can't stop it.

It keeps going.

And we know what's gonna happen.

People die.

And they die because they can't breathe.

And during the course of that disease, they lose their ability to speak, (patient sobbing) to swallow, to walk, to use their hands.

And I'm gonna go dictate some notes.

- [Jaye] Which is why Dr.

Glass has devoted his career and his research to deciphering and decoding this disease that affects one out of 350 to 400 people during their lifetime.

So that one day, instead of delivering a diagnosis that feels hopeless, he can deliver hope and treatment.

- So if you want me to come and chat, I can.

- [Jaye] The multidisciplinary clinic Glass created 30 years ago.

- Yeah, I think it's also part of the ALS.

- [Jaye] And now leads with neuromuscular neurologist Christina Fournier, has a single goal: to address all the needs of the patients in one day.

- On a clinic day- - The person with ALS comes in.

- They will potentially see- - Speech therapist, nutrition, social worker, nursing.

- A physical therapist, an occupational therapist.

- In one room.

It's kind of a one-stop shop.

And the whole team is here kind of centered around the patients.

- Hey, I was gonna come see you next.

Is that all right?

- [Jaye] Glass and Fournier lead a close-knit team of specialists.

- You've been able to meet several people at the clinic so far.

- [Jaye] Committed to caring for people with ALS.

- If you're already in that, you can save yourself the trouble.

- Then once it gets approved, he orders everything, gets it in, builds it, and then comes to you.

- [Jaye] For people with profound mobility issues- - Like, this is a specialty joystick knob.

- [Jaye] The clinic is more than a convenience.

- I'm gonna let you pull backwards on the joystick.

- [Jaye] Research shows it makes a meaningful difference.

- Wow.

- There's very clear evidence that multidisciplinary care in ALS actually improves outcomes.

People live longer.

They have better access to equipment.

Their quality of life is better.

- [Jonathan] So the way the chair works is the direction you point the joystick is the direction we're gonna go.

- [Christina] So it really is like the standard of care in ALS.

- [Jaye] In every room- - You'll either come see me- - [Jaye] Experts attend to the growing needs of the patients.

- [Speaker] It might be, I don't know how close it would be into the toilet.

I heard mixed things from people that- - [Jaye] And in every room, people who never imagined they would be here.

- You have to hold here, but you also have to stabilize here.

- No, but I have been dropping things.

- Barbara (indistinct) children are with her for her first clinic visit since her diagnosis.

- Of course.

- And I appreciate all you do.

- We do.

- We're happy to be here, and we're always here to help.

Okay?

(Barbara sobs) - [Jaye] Today is her 80th birthday.

(Barbara sobs) - And this whole thing started when?

Are you still walking at all?

- No, I'm not walking.

- [Jaye] Thanh Doan is an Emory osteoarthritis and spinal fusion researcher.

- How you doing with your arms?

- [Jaye] One year into diagnosis.

- You know this is gonna progress.

You know that.

- Yes.

Correct.

- About whether you wanted to have a tracheostomy and a ventilator.

Have you thought about that?

No, I haven't thought about that, 'cause I'm kind of waiting to see how it progresses and deal with it.

- How have you been?

- Good.

- You're okay?

- Yeah.

- [Jaye] 46-year-old Nicole Buchholz is a consecrated woman of Regnum Christi.

- I got diagnosed with ALS in 2019.

- [Jaye] A lay Catholic who gave her life to God, faith, and service.

- [Christina] Sometimes they can put all those documents in.

- [Jaye] Six years into ALS- - [Christina] Something that I've heard from- - [Jaye] Nicole is now cared for by the sisters with whom she lives.

- [Christina] She's an adventure girl.

So there we go.

This is your rollercoaster ride.

- [Jaye] Every room holds stories of families, love, fear, and worry.

- This is better than- - [Jaye] And the experts who spend their days caring for it all.

- If you've seen 10 people with ALS, you've probably seen 10 different trajectories.

- Let me go ahead and just make sure we do this letter.

- [Jaye] Social worker Sarah Penna helps families navigate insurance, equipment, and home care, supporting both the practical and emotional realities of an ALS diagnosis.

- She was just diagnosed on Tuesday.

- [Christina] Breathe in.

and put that mouthpiece on.

Sharp exhalation.

(breath blowing) Good.

- [Jaye] in one day, Barbara sees the entire team.

- [Chad] So this is just something to let gravity be your friend and help you you slide back.

- [Jaye] Including Chad Jones, who is fitting her for a wheelchair.

- This is letting you know which power seat function you're actually gonna operate.

- [Jaye] Things that would take weeks of scheduling and travel accomplished in a single day.

(contemplative music) - [Margie] I was 64 when I was diagnosed.

It took others four years to get diagnosed.

- [Alan] When she was first diagnosed, she was still exercising.

She was walking around the neighborhood.

(device whistling) - [Jaye] Margie Burgess and her husband Alan were asked to take part in a new Emory pilot.

- All right, so I would invite you to close your eyes, or you can leave them gently open if that feels better.

Whatever's most comfortable for you.

- [Jaye] A study built around compassion.

- [Jamie] You want your family to have strength.

- [Jaye] Margie has bulbar ALS, and uses her phone to speak for her.

- [Margie] We were asked by Emory to participate.

- [Jamie] There are some struggles that are outside of our control.

- I think somebody from the clinical team that said there's a study on compassion, cognitively based compassion training.

Would you be interested in participating in this study?

- And what we do at the end of the day is- - [Jaye] Dr.

Fournier is the principal investigator of a pilot of cognitively based compassion training for ALS patients and their care partners.

- So we've never had a trial here which had an intervention for care partners.

And that was really cool, because they suffer from ALS too.

And I think it's really appealing in ALS, where so much is out of the person's control, right?

I can't fix them.

Their body is going through these changes where they're losing independence.

And if we can reduce suffering through that, that's really something we should be doing.

- No, she was seeking happiness.

She was seeking comfort.

- [Jaye] Fournier partnered with the Emory Center for Contemplative Science and Compassion-Based Ethics.

(chime rings) Cognitively-based compassion training, CBCT- - You can just start meditating right now.

- Was developed at Emory by Tibetan Scholar and former monk, Geshe Lobsang Tenzin Negi.

- As they said, that pain is inevitable, but the suffering, emotional suffering is optional.

- [Jaye] It takes ancient mind training practices and translates them into a secular structured method using attention, reflection, and compassion exercises to reshape how we respond to stress, to illness, to each other.

And there we say this, it primes for security.

You know, that as you are doing this, you will feel more of that sense of connection, that tenderness.

And that will make you feel more safe.

- These sorts of interventions are especially effective when they're needed.

If you're depressed and you can't get out of bed- - [Jaye] Psychiatrist Charles Raison, director of research on spiritual health at Emory, has led studies on CBCT, showing that it can reduce inflammatory biomarkers, including C-reactive protein, cortisol, and IL-6 in college students, adolescents in foster care, parents of children with autism.

His work demonstrates how compassion meditation can influence measurable stress biology.

- There's a tradition with Buddhism that, you know, you don't really start seeking enlightenment until you see the world around you as being on fire.

It's in the context of adversity that things like CBCT really shine.

And I think, you know, if you look across the whole array of studies that we've done in this space, we see the largest CBCT signal in folks that are struggling with something.

- [Jaye] Participants in the pilot said it improved their mood, helped them cope, and they would do it again.

- Overall, the data's really encouraging, and the feedback was so positive from the participants.

They almost all said it was very worth their time.

They would do it again.

They found it beneficial.

It helped them.

- In life, there will be a lot of ups and downs, a lot of challenges like that, but they will not seem as daunting.

- The guided meditations have always been so good.

- [Jaye] Margie and Alan met weekly over Zoom with the CBCT practitioner.

- Her biggest disappointment is not being able to communicate well with her grandkids.

(gentle music) - [Jaye] Married for 38 years, with children and grandchildren, Alan left his career to care for Margie full time.

- [Margie] The best there is.

- She's talking about my caregiving.

One of the questions that they asked us afterwards, would I sign up again, and absolutely I would.

Any form of meditation is great.

And, you know, this really, and the fact that we did it together.

- [Margie] So I spend a lot of time being grateful for the opportunities we had with wonderful vacations.

I thought we have lived very full social lives, which we so enjoyed, and very glad we did all we did.

(gentle music) - [Jaye] Shortly after our last visit with Margie and Alan, Margie passed away.

(contemplative music) (film reel whirring) - [Jaye] From backyard games (crowd cheering) to the bright lights at the University of Alabama to the NFL.

- [Commentator] Awaiting the start of the second half, booting us into the second period, his end over end kick will come down to Goode at the one, across the 10, the 15, speed, and he gone!

30, 40, midfield.

Goodbye, Kerry Goode.

- [Jaye] Football gave Kerry Goode purpose.

- [Commentator] Touchdown!

- [Kerry] I loved football because it gave me the chance to push my body and mind to the limit.

It demanded discipline, sacrifice, teamwork, and heart.

And I embraced it all.

- And the strength that he always counted on started to slip away.

- [Kerry] That doesn't look anything like his does.

- [Jaye] 10 years ago, Kerry was diagnosed with ALS.

This is Kerry Goode's exercise routine.

We first met him two years later.

- Glad I played football.

At one point I could bench 400 pounds, squatted over 800.

Now I can't pick up a glass of water.

- [Jaye] Kerry shows us what happens when the body begins to fail but the mind and spirit endure.

- [Kerry] ALS tried to take things from me, but it also revealed the core of who I am.

I was meant to be a light in dark places, to lead even without a whistle or a voice.

- Are we getting on?

- [Jaye] Kerry's wife, Tanja, is his full-time caregiver.

- [Tanja] This controls the positions.

- [Jaye] In 2018, Kerry underwent a tracheostomy, a tube placed in the windpipe so a ventilator can breathe for him.

A step about eight to 10% of people with ALS take.

- I read lips very good now.

- [Jaye] Today he communicates with an eye gaze device and can still mouth words.

- Was she able to drive her computer by her eyes?

This journey of caregiving, it is a journey.

It is a learning experience.

It is a journey of patience.

You have to be open-minded.

And you have to just be able to be positive.

You have to also be able to be there and listen to him.

Be there, because it is a ever-changing game.

- [Commentator] You rarely see speed as dangerous as that exhibited by Kerry Goode.

- [Jaye] A once-elite athlete now living in a body that cannot do what his mind still can.

- [Kerry] I knew I had two choices: shrink into the diagnosis or stand up with purpose and fight for others like me.

That's where the Kerry Goode Foundation was born.

Out of that moment came not just struggle, but mission.

- So the check today is for $115,000.35.

- [Jaye] Kerry and Tanja founded the Kerry Goode Foundation, supporting families living with ALS.

- [Kerry] I've learned that I am still a teacher, still a fighter, still a servant at heart, that my purpose didn't end when my diagnosis began.

It just evolved.

(players exclaiming) (upbeat marching music) - [Jaye] And even now, Kerry returns to Alabama games, because football is still family.

And because he's still part of something bigger than his diagnosis, - [Kerry] It means reconnecting with a legacy I'm proud to be part of.

When I see that Crimson crowd and hear the band strike up, yay, Alabama, reminded of the dreams I once chased, and how I get to teach chasing purpose in a new way now.

- [Jaye] Kerry Goode is still a leader, still a teacher, only now the game is different.

- [Kerry] And maybe more than anything, I've learned that purpose does not end when the play clock runs out.

Sometimes that's when the real game begins.

(crowd cheering) (contemplative music) - [Jaye] On a quiet morning at his Alabama home, Eric Reutebach- - [Eric] We got some cherry tomatoes.

- [Jaye] Checks his tomatoes and tests the water in his leg.

- [Eric] You got to vocalize.

Here, fishy, fishy.

- (laughs) Fishy, fishy.

- [Jaye] What makes these ordinary moments extraordinary is his diagnosis.

- We were given an appointment to see Dr.

Glass.

He was diagnosed July 7th.

- [Jaye] The diagnosis came as a shock, but Eric and his wife, Maria, had already seen ALS once before: his brother died of the disease in 2004.

- Once I was diagnosed, I'm like, before they did any genetic testing, I'm like, "This is genetic."

I started out in research.

- [Jaye] He was right.

Eric has a genetic mutation called SOD1 that accounts for 2% of ALS cases.

Eric began to decline.

- There's a bit of a slope going down to the garden, and I would fall probably weekly.

I got real good at falling, so I didn't hurt myself too bad.

- [Jaye] He couldn't turn the switch on the lamp anymore.

- So every time I felt I needed to cry and I needed to talk seriously with God, I would go out, take a drive, and just, you know, drive.

And then I'll cry.

And then I'll come back.

- Good morning.

- [Jaye] One year into his diagnosis, Emery called; there was one opening in a clinical trial for people with SOD1.

- [Eric] And so I said, "Sign me up."

There was one opening in Emory.

- Any changes to symptoms?

- [Eric] And I got in, thank God.

- Blow until you're ready.

So in this SOD1 mutation, there's this SOD1 protein that is toxic to the motor nerves.

It drives this death of the motor neurons, which then causes the weakness and all of that.

And this antisense oligonucleotide therapy can actually decrease that protein production to turn off that bad protein that's driving ALS.

- [Jaye] Antisense oligonucleotides are gene-silencing therapies that block the production of harmful proteins.

- Mainly, I noticed that I was not declining anymore.

And then probably after, within a year, I was actually regaining strength, which blew my mind.

- [Jaye] Eric stopped falling down the hill in his backyard.

And... - I could turn the lamp switch on and off.

That was one thing that was very evident.

- For him, like, his ALS is kind of a mild chronic disease that he could live the rest of his life with.

It was one of the most exciting things that's happened.

We stopped ALS from progressing in this group of patients.

All right, you're gonna feel the numbing medicine.

- [Jaye] Now FDA-approved, the therapy requires monthly infusions in Atlanta.

- Oh, There's a lot of bream, bluegill.

- [Jaye] Nine years after his diagnosis, Eric is still living with ALS, but he's living.

- [Jonathan] That's a foot in the door.

That says this is a treatable disease.

We just need to figure out how to treat it with everybody else.

(contemplative music) Can I do something to actually slow this disease down?

- [Jaye] Nine years ago, before Eric entered that clinical trial, Dr.

Glass told us where this was headed.

- [Jaye] Dr.

Glass is working to turn off the genes that cause the disease.

- We're gonna start a trial, probably later this year, where these things will be put into the spinal fluid of patients, and hopefully they will target that abnormal gene and turn it off.

Boom.

It's like a switch that can turn it off.

We're gonna get a cure.

- [Jaye] The question is how do we take a genetic treatment that works for 2% and make it work for everyone else?

At Emory, physician scientists and researchers are working to find the signals that lead to treatments.

- I'm looking for biomarkers.

Mostly I'm looking for ALS biomarkers that we can find in blood.

- So this is a combination (faintly speaking).

I'm trying to understand, as I mentioned, trying to understand the disease mechanism underlying ALS.

And ALS is like 10% you have a family history, so meaning there's some sort of genetic mutations.

And there's 90% of ALS patients that are sporadic, no family history.

- My research is focused on early diagnostics for the detection of neurodegenerative diseases, a broad range of neurodegenerative diseases, including Alzheimer's disease and ALS.

- Right?

What do you do with it?

- [Jaye] For decades, trials asked one question: Does this drug work?

Now Glass and his team are asking another: What can we learn when it doesn't?

- We need to figure out, because there may be drugs in there that could have worked, but they just didn't, we didn't give 'em enough or it didn't get to where it needed to be.

Or it's not in the right areas of the nervous system.

And I can give you, I have a nice slide that I show of dozens and dozens of ALS treatments that have failed over the years.

And I would argue we don't know why.

- He had a paper on multiple- - [Jaye] One of the researchers studying why these trials failed is Zach McEachin, an assistant professor of human genetics.

- Why did the trial fail?

Did it fail because it's the wrong target?

Did it fail because the drug or the molecule, this ASO, did it not go where it needed to go?

- [Jaye] That kind of analysis can reveal the right patients, the right timing, and the right targets for future therapies.

- Galectin-3 is the biggest immune response.

- McEachin has also developed an antisense oligonucleotide to potentially treat ALS.

- I'm excited by the data.

You know, we just got new data in today that verified our first findings.

- Because this gene that we're attacking- - [Jaye] But first, a quick lesson.

- This protein called TDP-43, it's in all of our cells.

Everybody has it.

It's in the nucleus, and it it's important.

- [Jaye] TDP-43 is a normal protein we all have.

But in 97% of ALS patients, it ends up in the wrong place.

TDP-43 normally sits in the nucleus, the cell's control center, editing genetic instructions.

In ALS, TDP-43 leaves the nucleus and forms clumps.

Without that editor, the cell reads hidden junk segments called cryptic exons and begins building proteins incorrectly or not at all.

Antisense oligonucleotides are tiny synthetic genetic molecules designed to block those junk segments and restore the correct instructions.

- Using this data, so not only correct it, the one protein that we're targeting that is downstream of TDP, but it also corrected other proteins, you know, like in the cell.

- We have a drug, potentially, or a molecule that Zach has invented that actually can take 65% of these proteins, and there are hundreds of them, and shift them back here.

Not one at a time, but a whole bunch of them at the same time.

We've tried to prove it doesn't work, and we can't prove it doesn't work.

And so we're moving forward.

- We were quite excited, 'cause we said if we can do this in a model system, could we give patients with ALS this drug, and could that restore the function, and hopefully they would get better.

- [Jaye] The goal: give these therapies early when warning signs first appear.

- [Jonathan] Why are some trials failing?

- [Jaye] Glass hopes to begin human trials within two years.

- The idea would be with one potential intervention with an antisense oligonucleotide, we could potentially correct a majority of the protein abnormalities that are being caused by this loss of TDP-43.

This is the closest I've ever been to being so close to actually taking something from the laboratory and giving it to a patient.

I've never been this excited.

This one is a game-changer, 'cause it's going right at what I think is the basic core of this disease.

- Knock, knock.

(gentle music) - [Jaye] Back at the Emory ALS Clinic, This is why the work continues.

- Doing science is not easy, because we have a lot of failures.

And when I feel that I'm down, I always talk to Dr.

Glass.

I will go to his clinic, and just to see the patients.

And it really give me a lot of strength to really like continue my work.

- [Jaye] Every story is different.

Some are about care, some are about connection, some are about purpose.

And some are beginning to be about treatment.

This is what progress looks like now: not one miracle, but new paths forward.

(gentle music) And that's gonna do it for us this week.

See you next time on "Your Fantastic Mind."

(bright music) (bright music continues) - [Announcer] "Your Fantastic Mind," brought to you in part by Sarah & Jim Kennedy.