Episode 1

full
Published on:

25th May 2022

Susannah’s Story with Dr. Wendy Chung and Luke Rosen

Dr. Stan Crooke talks to Luke Rosen and Wendy Chung about Luke’s seven-year old daughter, Susannah.  Susannah has a genetic mutation that is progressive and debilitating.  Susannah is also an n-Lorem patient, which means that we are hard at work discovering and developing a personalized experimental ASO medicine just for her, for her specific mutation.  Her doctor, Wendy Chung, and Luke discuss Susannah’s life, her diagnosis and disease progression and the hope that they both have that there will be something that will make life better for her. 

Transcript
Dr Stan Crooke:

Hello I'm Stan Crooke founder chairman and CEO

Dr Stan Crooke:

of n-lorem. Welcome to the n-lorem podcast series. This is

Dr Stan Crooke:

a podcast series that focuses solely exclusively on the needs

Dr Stan Crooke:

of nano rare patients, that is patients that have a unique

Dr Stan Crooke:

mutation that affects only them, or are a member of a tiny group

Dr Stan Crooke:

of patients of less than 30 worldwide. Today, I'm privileged

Dr Stan Crooke:

to have two guests. Luke Rosen is a parent of one of our

Dr Stan Crooke:

patients. His seven year old daughter Susannah. Luke has had

Dr Stan Crooke:

three successful careers. He is an actor whom you have probably

Dr Stan Crooke:

seen in shows like Law and Order and Orange is the new black and

Dr Stan Crooke:

you know a number of other movies and media. And then when

Dr Stan Crooke:

he learned that Susannah was ill due to a rare genetic disease,

Dr Stan Crooke:

he founded a patient advocacy group which he continues to

Dr Stan Crooke:

lead. And in the process of learning about Susannah's

Dr Stan Crooke:

disease, he became such an expert that he was asked to be

Dr Stan Crooke:

vice president of patient engagement at Ovid Therapeutics.

Dr Stan Crooke:

Recently, however, he's taken a leave of absence from Ovid, to

Dr Stan Crooke:

focus exclusively on Susanna his family and his foundation. Our

Dr Stan Crooke:

second guest is Dr. Wendy Chung. Dr. Chung is is the Kennedy

Dr Stan Crooke:

family Professor of Pediatrics at Columbia University Medical

Dr Stan Crooke:

Center, where she wears a large number of other hats such as a

Dr Stan Crooke:

precision medicine resource leader in the Irving Institute,

Dr Stan Crooke:

Chief of Clinical Genetics and many other roles. Wendy received

Dr Stan Crooke:

her MD, degree from Cornell University Medical School and

Dr Stan Crooke:

her PhD in genetics from Rockefeller University. She is a

Dr Stan Crooke:

renowned a genetics scientist, and a medical geneticists and is

Dr Stan Crooke:

unusual in the breadth of diseases that and patients that

Dr Stan Crooke:

she's dealt with, but has a significant focus on

Dr Stan Crooke:

neurological diseases and in particular autism spectrum. She

Dr Stan Crooke:

has contributed groundbreaking genetics research and continues

Dr Stan Crooke:

to care for many patients. She has won numerous awards, and she

Dr Stan Crooke:

is consistently recognized as as an outstanding educator, and for

Dr Stan Crooke:

her commitment to medical and graduate education. Welcome to

Dr Stan Crooke:

both of you. Thanks. It's great to have you. So Luke, I'm going

Dr Stan Crooke:

to begin with you. What Why don't you tell us about life?

Dr Stan Crooke:

Before you had Susanna, Susannah?

Luke Rosen:

Thanks, Stan. And then thanks for having me here.

Luke Rosen:

It's a real pleasure. Before Susannah was was Nat our 10 year

Luke Rosen:

old son now who was was three one, Susannah was born. So it

Luke Rosen:

was very, you know, that feeling of being a new new parent and

Luke Rosen:

running all over the place and not being certain if you're

Luke Rosen:

doing things right or, or wrong. And I traveled a lot more than I

Luke Rosen:

do now. And so, I was, like you said I was an actor for about 20

Luke Rosen:

years. And we had a very nice, you know, sort of life on the

Luke Rosen:

west side of Manhattan. And we had playgroups and you know, we

Luke Rosen:

were that. We were very fortunate to have that. And then

Luke Rosen:

of course very fortunate to have Susanna. And yeah, that's before

Luke Rosen:

before it was kind of kind of normal. It was the old normal.

Luke Rosen:

We like to call it because we have a new normal now but the

Luke Rosen:

old normal.

Dr Stan Crooke:

How did you and your wife Sally meet?

Luke Rosen:

So we met in college. We both went to school

Luke Rosen:

in Connecticut. We met at Connecticut College and she was

Luke Rosen:

dating a good friend of mine

Dr Stan Crooke:

anymore. One of those a? Yeah. And is she a

Dr Stan Crooke:

performer two or we're doing those other things or

Luke Rosen:

Sally is an incredible, incredible actress.

Luke Rosen:

She's wonderful, but she doesn't care to admit it herself. She

Luke Rosen:

Sally Sally writes cookbooks and isn't incredible in the kitchen.

Luke Rosen:

And then that's yeah, Sally is a as a wonderful writer, and she's

Luke Rosen:

since slowed work down a lot. She cares. You know, both of us

Luke Rosen:

care for Suzannah, pretty much full time but Sally is the is

Luke Rosen:

the person who keeps the engine running in our house for sure.

Dr Stan Crooke:

So now we're going to be talking about topics

Dr Stan Crooke:

that are deeply personal and deeply painful, I'm sure and so

Dr Stan Crooke:

Luke, I very much appreciate your willingness to, to share

Dr Stan Crooke:

all that with us and and I fully expect to cry somewhere during

Dr Stan Crooke:

this interview. And that is exactly as it should be. Our

Dr Stan Crooke:

hearts should go out to people who are dealing with issues,

Dr Stan Crooke:

particularly issues that affect their young children. So a Luke

Dr Stan Crooke:

what happened? You know, how did your life change after Susannah,

Dr Stan Crooke:

you've already begun to tell us that, but I'd really be

Dr Stan Crooke:

interested in how you learned when you first began to worry

Dr Stan Crooke:

that you there might be something wrong. What, what what

Dr Stan Crooke:

you had to go through to get a diagnosis and, and then you

Dr Stan Crooke:

know, what, what, what you learned about the diagnosis and

Dr Stan Crooke:

how you how you proceeded from there?

Luke Rosen:

Yeah, it was a very, I say this. I've said this

Luke Rosen:

before, and parents know that if parents have more than one

Luke Rosen:

child, you know, for the first kid with Nat, I feel like I

Luke Rosen:

always say this to Wendy. But with NET, with Nat if he had,

Luke Rosen:

you know, a little rash, we would panic and run to the

Luke Rosen:

emergency room or something. Not quite. But with our second with

Luke Rosen:

Susannah, you know, it was kind of like, Oh, she's on her own

Luke Rosen:

timeline, you know, she'll, she'll get there. But we started

Luke Rosen:

noticing, there were a couple of different moments where we

Luke Rosen:

noticed that things were really, really not going in the right

Luke Rosen:

direction. And it was Sally actually in the had Susannah in

Luke Rosen:

the bathtub. And we used to do this thing where we would say to

Luke Rosen:

the kids, when they were in the bath when they were babies, you

Luke Rosen:

know, kick kick, kick, kick, kick, and we made a little song

Luke Rosen:

of it, kick, kick, kick, and Susannah just couldn't kick, she

Luke Rosen:

couldn't move her legs up like that. And Sally said, I think

Luke Rosen:

something's really wrong. And so that's when we went to, you

Luke Rosen:

know, first our pediatrician, and then our neurologist. And it

Luke Rosen:

became really clear that there was something significantly

Luke Rosen:

wrong with her health. And the neurologist at the time told us

Luke Rosen:

that we should, you know, they were just very stumped. We did a

Luke Rosen:

lot of tests, MRIs, EGS, everything. And the neurologist

Luke Rosen:

said that we should get genetic testing. And if Sally doesn't

Luke Rosen:

like me saying this, but if you're over a certain age, and

Luke Rosen:

we were we lived in Parliament at the time, so we the kids were

Luke Rosen:

born at Columbia. And, you know, Columbia is where we went when

Luke Rosen:

someone fell and got stitches. But if you're over a certain

Luke Rosen:

age, when you're having a baby at Columbia, it's a geriatric

Luke Rosen:

would do they call it a geriatric pregnancy or

Luke Rosen:

something. And it part of it is that you have to get a certain

Luke Rosen:

amount of genetic testing done. Very minimal. I now know. But so

Luke Rosen:

I thought when the neurologist, I said, Oh, we've already done

Luke Rosen:

that, but I didn't have a science background or don't have

Luke Rosen:

a science background. We've already done that. We've we've

Luke Rosen:

had the genetic testing, but they said no, there's a more

Luke Rosen:

extensive way to do it, you have to enroll in this research

Luke Rosen:

study. And so one night, we were in the hospital, and for a

Luke Rosen:

couple of couple of nights for something that was going on

Luke Rosen:

Susannah, and someone came in and we enrolled in the research

Luke Rosen:

study, and quite some time went by until we finally were able to

Luke Rosen:

hear that she had a mutation in this gene kiff one A, and we

Luke Rosen:

didn't know what that meant, at all. There was a moment when I

Luke Rosen:

was walking with her up Amsterdam Avenue, and she had

Luke Rosen:

she had very low muscle tone as a baby. But her legs shot up

Luke Rosen:

like planks and were stiff and she was scared and crying and,

Luke Rosen:

and that was the real moment where I thought something's

Luke Rosen:

horribly wrong. And so Sally and I, after we heard the diagnosis,

Luke Rosen:

kit, one A, we didn't know it was accompanied by a few

Luke Rosen:

research papers that did exist. And they were very scary papers

Luke Rosen:

to have. They said things like early death and brain atrophy

Luke Rosen:

and just these words that were really hard to digest and I I

Luke Rosen:

got this information before Sally did because I, you know,

Luke Rosen:

and so I came home and I, I had this window of time where I, I

Luke Rosen:

knew, but Sally didn't know. And I wanted that window of time. So

Luke Rosen:

to keep going, because I knew that what I was just going to

Luke Rosen:

have to say to Sally and tell her what I just found out and

Luke Rosen:

show her these papers was going to be. And it was quite

Luke Rosen:

literally heartbreaking. And then we started researching. We

Luke Rosen:

didn't know anything about this. So we started doing our own

Luke Rosen:

research and somebody said, You need to find Wendy Chung.

Dr Stan Crooke:

Luke, how old was Susannah, when you first

Dr Stan Crooke:

began to suspect there was a problem.

Luke Rosen:

Susannah was three, four months old when we saw

Luke Rosen:

something was just a little off, but not nothing that was

Luke Rosen:

incredibly concerning until she was about one one and a half

Luke Rosen:

now.

Dr Stan Crooke:

And then so how long was it before? You found

Dr Stan Crooke:

your way to understanding that she had this unique mutation in

Dr Stan Crooke:

this in this gene you knew nothing about?

Luke Rosen:

How long was it from when we

Dr Stan Crooke:

when you first went to your pediatrician to

Luke Rosen:

Oh, yes, I know what you mean now. So unfortunately,

Luke Rosen:

when you...

Luke Rosen:

it took a long time, it took about three months for us to get

Luke Rosen:

the results back from and that was because we, we, if we could

Luke Rosen:

do it all over again, I would have, you know, asked our doctor

Luke Rosen:

at the time to just prescribe our order us the test. Instead

Luke Rosen:

being part of the research study that we were in, that took

Luke Rosen:

significantly longer than it would have otherwise. So we were

Luke Rosen:

we had that those three months were really difficult because we

Luke Rosen:

were just waiting. And we didn't know if we were ever going to

Luke Rosen:

find out what was wrong with her. Every doctor we went to

Luke Rosen:

told us they had no idea really what was going on naked talk

Luke Rosen:

about the specific parts of her body, you know, well, an

Luke Rosen:

ophthalmologist would tell us that her I was moving one way

Luke Rosen:

because of one reason. And then a neurologist would say, you

Luke Rosen:

know, she's having these, this activity in her brain for one

Luke Rosen:

reason, but then no one can ever give us an exact really, this is

Luke Rosen:

what is wrong. So that was about three months of, of not knowing

Luke Rosen:

anything and being really scared.

Dr Stan Crooke:

Yeah, three months of terror and and then

Dr Stan Crooke:

watching your little child go to terrifying things like MRIs and

Dr Stan Crooke:

all that.

Luke Rosen:

Yeah. You know what people forget to tell that

Luke Rosen:

someone forgot to tell us when Suzannah was getting her first

Luke Rosen:

MRI that after as, as she was getting sedated. The baby shake

Luke Rosen:

a little bit. And the person who was doing that for us tell us

Luke Rosen:

that. And and as Suzannahs eyes were closing, I remember

Luke Rosen:

thinking, gosh, I don't want the last thing she sees before she

Luke Rosen:

goes under to see me crying, because I was getting it was

Luke Rosen:

scary to see that. But I know it's normal.

Dr Stan Crooke:

And I'm sure you know now that you actually had a

Dr Stan Crooke:

remarkable ly short period, the average time according to the

Dr Stan Crooke:

UDN data, the Undiagnosed Disease Network, data too for a

Dr Stan Crooke:

rare one of these kinds of diseases to be identified and

Dr Stan Crooke:

genetically characterized as something like eight years, and

Dr Stan Crooke:

of course, the vast majority of patients are are never

Dr Stan Crooke:

diagnosed. And so you learned that she had this mutation and,

Dr Stan Crooke:

and in a gene you didn't know about and and you found some

Dr Stan Crooke:

papers that told you that things were bad. And so how did how did

Dr Stan Crooke:

your son handle all that?

Luke Rosen:

Well, that had he was you know, he was four and he

Luke Rosen:

we tried to prep. We were very honest in our family in our

Luke Rosen:

house, but there are certain things that we wanted to protect

Luke Rosen:

him from. And he he's an incredible, incredible person.

Luke Rosen:

So he handled it in a way that was this is just my sister. This

Luke Rosen:

is how she gets around. This is how she you know looks So this

Luke Rosen:

is how she acts. But then there were some really scary times

Luke Rosen:

where he had to see some things that there still are every

Luke Rosen:

month, you know, he sees things that are very difficult that

Luke Rosen:

kids shouldn't see, and a, but he handles things, but he's,

Luke Rosen:

he's 10 going on 60

Dr Stan Crooke:

How Susannah doing today?

Luke Rosen:

Today she is, today, she's, she's actually today is a

Luke Rosen:

really good day, she doesn't usually make it through an

Luke Rosen:

entire day of school, we'll get a call from her aide or her

Luke Rosen:

para, who spends a one on one aide spends a day with her mom

Luke Rosen:

will get a call that she's either had a seizure or, or a

Luke Rosen:

bad fall or something or she's just, you know, not engaging

Luke Rosen:

with anybody and she's staring off in the teachers can't get

Luke Rosen:

her back to you know, back. Back...

Dr Stan Crooke:

She has she'll she has seizures and she has

Dr Stan Crooke:

muscle control and muscle weakness problems and, and

Dr Stan Crooke:

attention challenges and, and does she is she having some

Dr Stan Crooke:

developmental delays as well as result of all these problems?

Luke Rosen:

Oh, yeah, absolutely, Susannah is a, she's

Luke Rosen:

now started, she doesn't she, she could walk several steps

Luke Rosen:

just a matter of months ago, but now she started crawling instead

Luke Rosen:

of walking, and she spends most of her time in her wheelchair.

Luke Rosen:

But she is does have, yeah, her her cognition is certainly not

Luke Rosen:

that of a seven year old. You know, but she's, she smiles a

Luke Rosen:

lot. And she's very happy even when we know she's in pain.

Luke Rosen:

She's incredible.

Dr Stan Crooke:

She's beautiful. And, you know, that's her life.

Dr Stan Crooke:

Yeah, it shouldn't be but it is. And so you got to work like

Dr Stan Crooke:

parents often do in trying to understand what was going on

Dr Stan Crooke:

with Susannah. And I would have to guess that you felt lost the

Dr Stan Crooke:

vocabulary was basically impossible to understand. And as

Dr Stan Crooke:

you learn more, you got more and more terrified, huh?

Luke Rosen:

Absolutely! It was a, yeah, then the not knowing,

Luke Rosen:

and still right now, every all the just not knowing what

Luke Rosen:

tomorrow is going to be like for Susannah is really hard because

Luke Rosen:

she, every day is kind of an improv, right? She's, if she has

Luke Rosen:

one night where she's, she has nocturnal epilepsy more than

Luke Rosen:

epilepsy during the day. I mean, she has both but if she has a

Luke Rosen:

night that's filled with seizure activity, then we know her day

Luke Rosen:

is going to be really hard for her, you know. So she, her her

Luke Rosen:

she's very spastic now in her or her lower limbs. She also has a

Luke Rosen:

neuropathies in her her hands and her feet. So she will, a,

Luke Rosen:

she has a lot of pain in her hands, and she'll wake up in her

Luke Rosen:

own way. And she, Susannah has has words she's she can express

Luke Rosen:

herself in our own way, she'll tell us that it feels like her.

Luke Rosen:

Her hands are burning on the inside. And that's hard to hard

Luke Rosen:

to have a kid wake up and yeah.

Dr Stan Crooke:

So you meet Wendy and, and and you have a

Dr Stan Crooke:

diagnosis, and my guess is that your first question after that

Dr Stan Crooke:

was is there any treatment?

Luke Rosen:

Yeah, well, we we met Wendy because somebody had

Luke Rosen:

told us that Wendy was the person who could articulate this

Luke Rosen:

and tell us what was happening and maybe care for Susannah. And

Luke Rosen:

so I emailed Wendy and she emailed me back within minutes

Luke Rosen:

and asked if Sally and I wanted to come in to her office, and

Luke Rosen:

she could explain the implications of what kiff one a

Luke Rosen:

was meant. And so we did it early in the morning, we went to

Luke Rosen:

Wendy's office at Columbia. And we I talked about this a lot and

Luke Rosen:

we were mentioning the elevator ride up there was Sally and I

Luke Rosen:

were really, really anxious, of course, and Susannah wasn't with

Luke Rosen:

us. And so it was one of the first times that we were in the

Luke Rosen:

hospital without Susannah. And we had this, you know, a moment

Luke Rosen:

where we were are alone and got to spend time together. But it

Luke Rosen:

was, because that doesn't happen, you know, somebody has

Luke Rosen:

to be with Susannah 24 hours a day, all the time. And then when

Luke Rosen:

and when the elevator did open, and this is I remember this just

Luke Rosen:

so clearly the people who were there, you know, there was a

Luke Rosen:

genetic counselor and a social worker, and the nurse

Luke Rosen:

practitioner. And Sally, and I knew that, you know, we were

Luke Rosen:

about to hear something that needed an army of people to help

Luke Rosen:

us with. And we went into into this smaller room near Wendy's

Luke Rosen:

office and, and Wendy came in and told us and just very

Luke Rosen:

clearly, and with this, this empathy that is really rare.

Luke Rosen:

What to expect and that, you know, there's not much known we

Luke Rosen:

could find maybe 15 people in the world that had a mutation in

Luke Rosen:

KIF1A and nobody with Suzannah's at the time. And that, Susannah,

Luke Rosen:

that it was a neurodegenerative disease, likely with a

Luke Rosen:

progressive course. You know, she would probably have trouble

Luke Rosen:

seeing was she does she has vision problems should probably

Luke Rosen:

be in the chair. It was really we were, that was a hard

Luke Rosen:

conversation. I can't imagine ever having that again. But it

Luke Rosen:

was, it was a it was a lot of crying. And I, you mentioned my

Luke Rosen:

son Nat and this is the moment, of all of this about Susannah's

Luke Rosen:

health and about this, this diagnosis, and when Wendy was

Luke Rosen:

telling us what to, you know, what it was, the moment I

Luke Rosen:

remember most, and is the hardest thing was, I said in the

Luke Rosen:

middle of the conversation, how are we going to tell them Nat?

Luke Rosen:

How are we going to tell Susannah's brother about this,

Luke Rosen:

how do you tell the kid this, and when the, sorry, and Wendy

Luke Rosen:

looked at me and said he's going to be a remarkable young man one

Luke Rosen:

day. So for some reason, that's what I remember most about this,

Luke Rosen:

this moment of finding out this devastating disease that Sally

Luke Rosen:

had was or that Susannah has was trying to figure out how I was

Luke Rosen:

going to explain it to my son. And then, Wendy walked us out of

Luke Rosen:

the hospital. And you know, it wasn't just, here's the

Luke Rosen:

diagnosis, good luck. It was, you know, she walked us

Luke Rosen:

downstairs, through the building, out into it, even

Luke Rosen:

right when we got into the taxi, and there was a hug, and then

Luke Rosen:

and I'll see you soon. And so we felt like we had this support

Luke Rosen:

that I now know, not many people have.

Dr Stan Crooke:

Oh, and that's sadly very true. Luke, I want to

Dr Stan Crooke:

move to Wendy, ut I do want to ask one last last question.

Dr Stan Crooke:

n-lorem what does it mean to you and your family, that Suzannah's

Dr Stan Crooke:

is application was accepted by n-lorem as a potential for

Dr Stan Crooke:

treatment?

Luke Rosen:

Yeah, that's another moment that I'll never forget is

Luke Rosen:

when Wendy was able to tell us that the to to it means

Luke Rosen:

everything, Stan, to that there's people are fighting for

Luke Rosen:

treatment for her and that is actually going to hopefully

Luke Rosen:

become a reality and that we might be able to change the

Luke Rosen:

course of Suzannah's life. It's really hard. It's hard to watch

Luke Rosen:

Suzannah's has life right now, and to think that there's going

Luke Rosen:

to be a you know, there could be a treatment for her that would

Luke Rosen:

not make it as severe, not make life so hard for for her has

Luke Rosen:

just beyond measure words can't describe it. It's hard to it

Luke Rosen:

means everything to us, Everything!

Dr Stan Crooke:

And you're sophisticated enough to know

Dr Stan Crooke:

that there are no promises of any sort that anybody could make

Dr Stan Crooke:

at this stage. So it's, it's hope and hope for help is I

Dr Stan Crooke:

suppose is the way to think of it.

Luke Rosen:

It's yeah, absolutely! We are so, the

Luke Rosen:

desperatio is teaming throughout our lives in our house, and

Luke Rosen:

yeah, it's it's a hope for something that we didn't think

Luke Rosen:

would ever be there, and it is so, yeah.

Dr Stan Crooke:

Yeah, you know, just the hopelessness and

Dr Stan Crooke:

isolation of patients that that we are trying to help is is

Dr Stan Crooke:

detrimental to health. Hopelessness is bad for health

Dr Stan Crooke:

and helplessness is terrible.

Luke Rosen:

That's really well said it is. It is grinding and

Luke Rosen:

that, that hopelessness is is we're so thankful.

Dr Stan Crooke:

Yeah, well, we at n-lorem feel privileged to

Dr Stan Crooke:

have Susannah as a patient and to work with Wendy. And, you

Dr Stan Crooke:

know, we'll keep our fingers crossed and do our level best

Dr Stan Crooke:

and we'll all work together for Susannah. And I would say that I

Dr Stan Crooke:

think every patient should experience the care that Wendy

Dr Stan Crooke:

displayed. And sadly, I think you're right, Luke that in far

Dr Stan Crooke:

too few times is that the case. So you are very fortunate in

Dr Stan Crooke:

many, many ways, in the midst of, you know, a tragic

Dr Stan Crooke:

situation. So Wendy, I'm going to turn to you now. And we'll

Dr Stan Crooke:

try to brighten up the conversation here, maybe. So, I,

Dr Stan Crooke:

know, your background, and of course, I've admired your work,

Dr Stan Crooke:

but, I'm intrigued by how you do it. How do you, how do you

Dr Stan Crooke:

manage every day? Well, talk about clinic day, I guess, how

Dr Stan Crooke:

do you manage seeing so many patients who are in a position

Dr Stan Crooke:

similar to Susannah?

Dr Wendy Chung:

Well, number one is I'm the one who's on the

Dr Wendy Chung:

screen, but there's an army of people behind me. That's the

Dr Wendy Chung:

real magic to all of this. And so we have a caring team, Luke

Dr Wendy Chung:

mentioned, you know, our genetic counselors, or nurse

Dr Wendy Chung:

practitioners our social workers. But, even beyond that,

Dr Wendy Chung:

we've gotten an army of scientists, computational

Dr Wendy Chung:

biologists, bench scientists, neuroscientists, both here and

Dr Wendy Chung:

around the world who are all fighting for Suzannah and all of

Dr Wendy Chung:

Suzannah's friends. So as we do that, you know, I think we've

Dr Wendy Chung:

learned, it's taken me in some cases, 25 years, how to figure

Dr Wendy Chung:

out some of the things that I do. But as we've done it, we've

Dr Wendy Chung:

tried to scale ways to do it and put everyone to work. And so

Dr Wendy Chung:

even though the team that I mentioned are, you know, paid

Dr Wendy Chung:

people on my team, the rest of our team is actually our

Dr Wendy Chung:

families. So families like Luke and and I want to give Luke a

Dr Wendy Chung:

lot of credit. He has mobilized a very powerful community of

Dr Wendy Chung:

families behind him, and it's together that we get these

Dr Wendy Chung:

things done. And as we do this, we all have a role to play, and

Dr Wendy Chung:

we all take feedback, and we iterate and we get better and

Dr Wendy Chung:

better as time goes on. And we have partners like n-lorem,

Dr Wendy Chung:

which I can't I mean, I'm really good at some of the things that

Dr Wendy Chung:

I do, but I can't do what you guys do, and together, it's the

Dr Wendy Chung:

dynamic, not just duo but dynamic, I don't know what a

Dr Wendy Chung:

million people is, but it's a lot of us all working together.

Dr Wendy Chung:

And the hope is that although you know what we're doing for

Dr Wendy Chung:

Susannah is important exactly for Susannah. The lessons that

Dr Wendy Chung:

we're learning for Susannah, I'm convinced scale beyond Susannah.

Dr Wendy Chung:

And so it's how can we do this, not just for Susannah, but

Dr Wendy Chung:

Susannah has friends and KIF1A other 500 or so neuro genetic

Dr Wendy Chung:

conditions that I think about the 7000 other rare genetic

Dr Wendy Chung:

diseases that we know about plus the others, we're just

Dr Wendy Chung:

discovering. I think those are really the incredible

Dr Wendy Chung:

opportunities, but it's tough, because right now, you know,

Dr Wendy Chung:

Susannah is one of very few individuals with exactly her

Dr Wendy Chung:

genetic change, and we need to target her genetic change in

Dr Wendy Chung:

this case, and so she really is more than one in a million, you

Dr Wendy Chung:

know, probably one in 50 million, but that doesn't mean

Dr Wendy Chung:

we leave her behind.

Dr Stan Crooke:

It doesn't mean that at all. And you know, I

Dr Stan Crooke:

think I think you handle these things as, as I handle them and

Dr Stan Crooke:

as Luke and and parents and and patients do and that is you find

Dr Stan Crooke:

ways to take control of what you can control and find ways to

Dr Stan Crooke:

accept those things that you can't you can't control

Dr Stan Crooke:

otherwise, otherwise the process is too destructive. I imagine

Dr Stan Crooke:

that rings pretty true to you, Luke.

Luke Rosen:

Yeah, it does. It's it's it's pretty hard not to be

Luke Rosen:

able to control the outcome of the day or just didn't you know

Luke Rosen:

what is happening next and, and that loss of control and lack of

Luke Rosen:

direction or spotting the spontaneous things that happen

Luke Rosen:

in life or It's really hard. But like Wendy said, we have this,

Luke Rosen:

you know, community of people who are just so supportive. And

Luke Rosen:

yeah, it's it's a lot there was one. Wendy has been kind enough

Luke Rosen:

to invite us to speak once in a while to every year to her

Luke Rosen:

medical students. And this year was, was pretty awesome. Because

Luke Rosen:

it fell on a voting day. So the kids in that school, so not and

Luke Rosen:

Suzannah came to. And I never want Nat to know what the word

Luke Rosen:

degenerative means, although he's getting old enough to see

Luke Rosen:

that things are getting changing with her sister button or his

Luke Rosen:

sister, but I had told Susannah, I wanted to prep her for what

Luke Rosen:

was happening. And I said, they'll, you know, there'll be a

Luke Rosen:

microphone that one of us will have, and Wendy brought, pushed

Luke Rosen:

Suzannah's wheelchair and, and Susannah came and took the

Luke Rosen:

microphone and, and she sang a part of the song from Frozen.

Luke Rosen:

And it was in front of, you know, I don't know how many

Luke Rosen:

students were in there, but you know, seemed like a lot. And she

Luke Rosen:

had this...

Dr Wendy Chung:

auditorium full of 200 students all watching

Dr Wendy Chung:

Suzannah perform.

Dr Stan Crooke:

She's from a family are performers. So

Dr Stan Crooke:

naturally, she's going to be a star.

Luke Rosen:

Yeah, but yes, she is. And but but seeing, seeing

Luke Rosen:

her do that is not something and I never sell her short. I know

Luke Rosen:

she can do anything she wants to do. But there are things where,

Luke Rosen:

you know, you think about am I ever gonna get to see my

Luke Rosen:

daughter do dot dot dot. And as I was sitting there watching her

Luke Rosen:

even though we were talking to these medical school students,

Luke Rosen:

I, I, somebody said, Did you take a picture? Or did you

Luke Rosen:

record it? I said, No, I just lived it, I got to see my

Luke Rosen:

daughter sing a song to a big audience, but that was another

Luke Rosen:

great gift. So thank you Wendy.

Dr Stan Crooke:

Wendy, why don't you tell us about the the gene,

Dr Stan Crooke:

KIF1, and what what it does, what the protein does and why

Dr Stan Crooke:

Susannah is sick.

Dr Wendy Chung:

So Susannah has a genetic variant. It started

Dr Wendy Chung:

brand new with her. It wasn't inherited from either Luke or

Dr Wendy Chung:

his wife, Sally, and the gene itself is a kinesin, and it's a

Dr Wendy Chung:

molecular motor. So it's responsible for taking things

Dr Wendy Chung:

down these very long exons are these very long projections out

Dr Wendy Chung:

of neurons that go all the way from her head and the neurons in

Dr Wendy Chung:

her head, but also the ones that go through her spinal cord and

Dr Wendy Chung:

go down her legs to her toes and out to her fingertips. Those

Dr Wendy Chung:

very long, if you think about it, the length, you have to go

Dr Wendy Chung:

from your head all the way down to your big toe, it's a long way

Dr Wendy Chung:

to go. And so those motors are responsible for going a long,

Dr Wendy Chung:

long way. And with this Susannah's motor doesn't work

Dr Wendy Chung:

very well. It has trouble in terms of if you think about a

Dr Wendy Chung:

train, sometimes it gets stalls on the tracks, it gets stuck and

Dr Wendy Chung:

there's a traffic jam. Sometimes it falls off of the of the

Dr Wendy Chung:

tracks, and you know, it sort of loses its way in that way. And

Dr Wendy Chung:

with that, without being able to deliver the cargo of those

Dr Wendy Chung:

trains, those cells die. They die over time. And once they're

Dr Wendy Chung:

gone. I can't say for 100% sure, but I'm 99% sure they're not

Dr Wendy Chung:

coming back. And so as Luke described this, this is

Dr Wendy Chung:

unfortunately a one way street and the Luke and the families

Dr Wendy Chung:

have a very obvious hashtag when you think about it, hashtag stop

Dr Wendy Chung:

the clock, because that's what we think about in terms of time

Dr Wendy Chung:

is ticking. And once we start, you know, losing some of those

Dr Wendy Chung:

cells, they don't come back. Suzannah has this neuropathy or

Dr Wendy Chung:

this painful feeling that she has the burning...Suzannah

Dr Wendy Chung:

describes it and some of the older patients have described it

Dr Wendy Chung:

for me as well. It's a burning sensation that really hurts I

Dr Wendy Chung:

mean, like deeply hurts in terms of your hands and your feet, and

Dr Wendy Chung:

just feeling tight feeling like you can't really relax or let

Dr Wendy Chung:

go. And with that, it's just it's a painful, uncomfortable

Dr Wendy Chung:

feeling. And we try medications we see at try some of the same

Dr Wendy Chung:

medications we use for other patients who have what we call

Dr Wendy Chung:

neuropathy. These are these problems with their nerve cells,

Dr Wendy Chung:

but it never really completely goes away and at times, it gets

Dr Wendy Chung:

worse than other times. So that's part of it. But we've

Dr Wendy Chung:

literally and I know this is hard for you to hear Luke so I'm

Dr Wendy Chung:

sorry about this, but we literally see Susannah losing

Dr Wendy Chung:

cells over time, we can image her brain. We can that MRI that

Dr Wendy Chung:

Luke described we can look at her brain. We can see part parts

Dr Wendy Chung:

of her brain that are shrinking, we're losing those cells and,

Dr Wendy Chung:

and they're dying off, we can look in her eyes, we can see her

Dr Wendy Chung:

optic nerve going to her eye, we can see those cells dying off,

Dr Stan Crooke:

Is she is she losing sight then?

Unknown:

Yep, she's losing sight. And it's so hard for Sus,

Unknown:

I mean, she's such she really is my heroine, but it's so hard for

Unknown:

her because she's got so many things battling against her. She

Unknown:

has trouble with this fastest city being able to move, but she

Unknown:

wants to be a kid, right? She wants to just play and have fun.

Unknown:

And you can imagine sometimes, because she's not seeing things

Unknown:

out of this, you know, corners of her eyes are seeing them

Unknown:

clearly enough. Plus, she has trouble in terms of moving and

Unknown:

she has trouble with her balance, she falls a lot more

Unknown:

than other kids do. And sometimes when she falls, she

Unknown:

doesn't know what she's gonna fall into. And so it's just

Unknown:

hard. Suzannah has broken bones, more bones than her collarbone

Unknown:

her arm. And, you know, when she breaks a bone, it's so hard for

Unknown:

her because then she's immobilized, and it makes it

Unknown:

that much harder for her to get back to where she was. And so

Unknown:

she has these, you know, it's sort of declining, but then, you

Unknown:

know, it's almost like a big step down. And she's got to

Unknown:

work, work work to just try and get anywhere close to where she

Unknown:

was. But it's hard. Within that there's also been this other

Unknown:

major major problem, which is that in terms of in her head,

Unknown:

she's just got an electrical storm, the seizures, in other

Unknown:

words that are going on. And again, I don't I hate doing this

Unknown:

to you, Luke. So but it's it, this is no joke. We've had, we

Unknown:

have just an incredible community, but we've lost so

Unknown:

many of our children to this disease. And we've lost them due

Unknown:

to some of these seizures, in some cases, unexpectedly. And I

Unknown:

know that's what scares us to death is. And I know, Luke and

Unknown:

Sally are just, if you can imagine, I don't think they've

Unknown:

gotten a good night's sleep. You know, since Susannah was

Unknown:

probably, I don't know, two and a half, three years old.

Unknown:

Because, we didn't we've have actives that we've lost to

Unknown:

seizures in the middle of the night. And so literally, Luke

Unknown:

and Sally, one of them is sleeping with Susannah. Some

Unknown:

cases, Luke mentioned Nat, Nat's had even occasion to be the big

Unknown:

brother in terms of sort of being the angel watching over

Unknown:

Sus as she's sleeping. And in some cases, having a seizure or

Unknown:

throwing up or having something caught and having to literally

Unknown:

be able to make sure that she doesn't choke on her own vomit

Unknown:

or that she doesn't have a seizure that she doesn't wake up

Unknown:

from. And it scares us because we've had kids that we've lost

Unknown:

that way. As Susannah goes through this, as Luke said, you

Unknown:

know, we haven't we, we've tried just any number of medications

Unknown:

for Susannah seizures, and she's on a cocktail of medications.

Unknown:

It's not just one, but it's a cocktail. And it changes. It's

Unknown:

not like you get it and you find the right mixture, and you're

Unknown:

good to go. It's like you might be good to go for a few months.

Unknown:

And then it's all over again, trying to figure out what this

Unknown:

is, and making it so that she's not a zombie, because, you know,

Unknown:

there's some of these medications that are sedating.

Unknown:

And then she's just out of it. And that's not a life, you know,

Unknown:

you want her to be a kid. But you also don't want to lose her

Unknown:

or have her so that she's having so many. We call them postictal

Unknown:

periods but times after a big seizure that she's just out of

Unknown:

it for that reason. So it's just, I can't tell you, it's a

Unknown:

hard life. Susannah has many I think of them as angels watching

Unknown:

over her besides her family. She's got her service dog

Unknown:

Pippin, who is just it's amazing. I mean, Pippin is a

Unknown:

great for, I think, a great therapy dog for Sus general. But

Unknown:

she's got her aide, she's got a teacher, she's got therapists. I

Unknown:

mean, it literally takes an army, that even still, there is

Unknown:

a team hovering over Susannah 24/7 I kid you not it really is

Unknown:

24/7 to be able to keep her safe. And I have to say though,

Unknown:

on the other hand, Susannah is just a joy. I mean, it is a joy

Unknown:

to see the things when she gets to eat an ice cream sundae or

Unknown:

celebrate her birthday or be able to go, you know, it's ice

Unknown:

skating. But it's Suzannah's form of ice skating at this time

Unknown:

in terms of being able to go to the beach and just enjoy looking

Unknown:

for shells or playing hockey or doing a car wash. I mean, it's

Unknown:

just I feel like I'm even though I don't get to spend as much

Unknown:

time with Susannah under COVID I get so many pictures and videos

Unknown:

that I get to be a part of the extended famil, but it's just,

Unknown:

it's that joy that it motivates me and my team to do what we do

Unknown:

every day. Because it's it's allowing kids like Susannah to

Unknown:

live their riches fullest lives and we want to make them

Unknown:

actually have those lives. That's the painful part every

Unknown:

time we see or take a step back.

Dr Stan Crooke:

Why don't you spend just a minute on how we

Dr Stan Crooke:

hope to treat Suzannah and why you think it might work.

Dr Wendy Chung:

Yeah. So as I was talking about Susannah, and

Dr Wendy Chung:

these trains going down the train tracks. Susannah has one

Dr Wendy Chung:

version of the gene that's perfectly fine. Those trains I

Dr Wendy Chung:

think run on time they run on schedule, but she's got another

Dr Wendy Chung:

copy of the train Um, that is clogging things up. It's, it's

Dr Wendy Chung:

making a traffic jam, it's causing problems. And so

Dr Wendy Chung:

essentially what we need to do ironically, is get rid of one of

Dr Wendy Chung:

her genes, be able to get that train out of the way, let the

Dr Wendy Chung:

traffic flow and be able to maintain the health of those

Dr Wendy Chung:

nerve cells. That's a tough order. We don't have you know, a

Dr Wendy Chung:

medication, I can't just say, you know, take two aspirin and

Dr Wendy Chung:

call me in the morning, I don't even have something like the

Dr Wendy Chung:

seizure medications, there's nothing we know of currently in

Dr Wendy Chung:

terms of just a regular pill that you can take for Susannah

Dr Wendy Chung:

to either treat the symptoms effectively or to get at the

Dr Wendy Chung:

root cause of the disease. And that we know that if we don't do

Dr Wendy Chung:

something to get at the root cause, she will continue to go

Dr Wendy Chung:

downhill with this, the sort of just to put it in simplistic

Dr Wendy Chung:

terms, the ASO that n-lorem is developing is going to be able

Dr Wendy Chung:

to suppress or to be able to prevent that bad KIF1A from

Dr Wendy Chung:

being made, or at least decrease it to such a low level that it's

Dr Wendy Chung:

not going to cause the mischief that it's causing. It's a tall

Dr Wendy Chung:

order. And I want to emphasize this is like this is not a

Dr Wendy Chung:

trivial thing to do, because we have to get rid of that the bad

Dr Wendy Chung:

KIF1A while maintaining the good KIF1A, because we need those

Dr Wendy Chung:

trains to still keep going down the train tracks. We've got a

Dr Wendy Chung:

team of people n-lorem. And I do have to say, a lot of my

Dr Wendy Chung:

confidence is built in my history with dealing with

Dr Wendy Chung:

another rare disease community called Spinal Muscular Atrophy.

Dr Wendy Chung:

And so a lot of the playbook that we've taken for KIF1A is

Dr Wendy Chung:

built on the antecedent about 12 years that we had experience

Dr Wendy Chung:

with SMA. And that same strategy worked in terms of Stan, you

Dr Wendy Chung:

should take a lot of credit for this one. Because for this with

Dr Wendy Chung:

SMA this was our first FDA approved treatment for SMA. And

Dr Wendy Chung:

I can't tell you how many children I buried with SMA

Dr Wendy Chung:

before we had the ASO treatment that we had with that. And so it

Dr Wendy Chung:

was that inspiration that really convinced me that we had a

Dr Wendy Chung:

chance with KIF1A and I don't have to guarantee but we've got

Dr Wendy Chung:

a chance in terms of going forward. And it's with that,

Dr Wendy Chung:

that I really do think the strategy should work

Dr Wendy Chung:

scientifically, it makes sense, Stan and all of the other

Dr Wendy Chung:

scientists that n-lorem have just an incredible insight to

Dr Wendy Chung:

the chemistry of how this works and to be able to design what

Dr Wendy Chung:

are very, very specific molecules to be able to do this

Dr Wendy Chung:

without being toxic without doing any damage. And to fine

Dr Wendy Chung:

tune this and just the exact way that we need. And they've been

Dr Wendy Chung:

so incredibly generous, to literally donate all of that

Dr Wendy Chung:

incredible experience and knowledge in the direction of

Dr Wendy Chung:

children like Susannah. And there's I can tell you I know a

Dr Wendy Chung:

lot of things I don't know this, I don't know this chemistry,

Dr Wendy Chung:

this isn't something that any scientist like any one of us

Dr Wendy Chung:

could do just by thinking hard enough, or, you know, sort of

Dr Wendy Chung:

working enough of it really takes the decades of experience

Dr Wendy Chung:

that Stan and his team have. And it's us working together with

Dr Wendy Chung:

KIF1A.org with the other families, in terms of all making

Dr Wendy Chung:

this work, and I'm convinced we're on the right road.

Dr Stan Crooke:

I am too and and, and being involved with

Dr Stan Crooke:

Spinraza, our drug for Spinal Muscular Atrophy was one of the

Dr Stan Crooke:

many high points and in my long career, but what we're doing at

Dr Stan Crooke:

n-lorem is even more gratifying to those of us who are doing it

Dr Stan Crooke:

and and so, you know, the one thing that we have going for us

Dr Stan Crooke:

with these nano rare diseases is they're all genetic. And, and so

Dr Stan Crooke:

once we understand the mutation, we have a potential target. And

Dr Stan Crooke:

now with with ASOs, we have genetic medicines. And so we can

Dr Stan Crooke:

take that information directly and translate it to a medicine

Dr Stan Crooke:

that we can use to treat a patient like Susannah. And, you

Dr Stan Crooke:

know, to try to do that in 12 to 15 months start to finish is a

Dr Stan Crooke:

real challenge and especially in these more complex mutations

Dr Stan Crooke:

where we have to be very specific for one form of one out

Dr Stan Crooke:

one part of the two part gene system. So it's challenging, but

Dr Stan Crooke:

I think the technology is up to it and and I also believe that

Dr Stan Crooke:

it has to be scalable. And if we take a commitment, make a

Dr Stan Crooke:

commitment to a patient, we have to be ready to treat that

Dr Stan Crooke:

patient for life. And we are and we can do that we can do it for

Dr Stan Crooke:

free. And we are so again, Luke and Wendy. It's just a great

Dr Stan Crooke:

privilege to know both of you. And I want to thank you for

Dr Stan Crooke:

sharing all this with this. Before we close I Luke any any

Dr Stan Crooke:

final comment that you want to make?

Luke Rosen:

Yeah, I you know, I just thought of about three

Luke Rosen:

years ago I took this video of our son Nat, Susannah was in her

Luke Rosen:

chair and Nat was teaching Susannah how to throw a coin

Luke Rosen:

into a, you know, into into a water to make a wish. And he

Luke Rosen:

explained it, you know, you have to throw it this way, and then

Luke Rosen:

you make a wish, but don't tell anybody what that wish is. And

Luke Rosen:

then she through it, and it got in there. And I emailed that

Luke Rosen:

video to Wendy. I said, look at this Nat sending, you know,

Luke Rosen:

teaching Susannah how to make a wish, and Wendy just wrote back

Luke Rosen:

one sentence, and that sentence was, "I know what my wish is",

Luke Rosen:

and it's my wish too, and Stan and your whole team, I think,

Luke Rosen:

you know, you're you're working so hard to make a wish come

Luke Rosen:

true, so thank you.

Dr Stan Crooke:

Wendy, any final comment?

Dr Wendy Chung:

Now, just to say that it's not easy. I know, it's

Dr Wendy Chung:

not easy for Luke and Susannah, and Sally and Nat every single

Dr Wendy Chung:

day and we're there behind you. There are different things that

Dr Wendy Chung:

we do to support Susannah, and together we're really powerful

Dr Wendy Chung:

team and I know we're going to be able to get to something

Dr Wendy Chung:

better.

Dr Stan Crooke:

Well, let me I can't think of a better way to

Dr Stan Crooke:

close this. We are all in pursuit of something better.

Dr Stan Crooke:

Children should not suffer! And so, we will do our best. So I

Dr Stan Crooke:

want to thank both of you very much. It's been a wonderful

Dr Stan Crooke:

privilege to have you share all this with us. And and and and

Dr Stan Crooke:

I'm sure we'll have we'll have more opportunities to talk in

Dr Stan Crooke:

the future and I look forward to them being much more positive.

Dr Wendy Chung:

So do I.

Kira Dineen:

Does genetics facinate you? Of course it does!

Kira Dineen:

You're listening to this podcast, discover new advances

Kira Dineen:

in the world of genetics with DNA today Podcast. I'm Kira

Kira Dineen:

Dineen. I'm one of the producers of the n-lorem Patient

Kira Dineen:

Engagement Program podcast. And I'm also the host and producer

Kira Dineen:

of DNA today podcast I use my expertise in genetics to help

Kira Dineen:

you understand the complexities through interviews with leaders

Kira Dineen:

in the field, including the host of this podcast, Dr. Stan Crooke

Kira Dineen:

he was on episode 141. DNA today explores genetic technologies

Kira Dineen:

like home DNA kits, CRISPR, groundbreaking research, and

Kira Dineen:

rare diseases. For decade DNA today is brought you the voices

Kira Dineen:

of genetic pioneers. There's over 185 episodes, so plenty to

Kira Dineen:

keep you entertained and updated about genetic news. The show is

Kira Dineen:

a fan favorite winning the People's Choice best science and

Kira Dineen:

medicine podcast award for the past two years. Learn more at

Kira Dineen:

DNApodcast.com and subscribe rate and review on Spotify,

Kira Dineen:

Apple podcasts, Google podcasts or wherever you're listening to

Kira Dineen:

this podcast. Discover new advances in the world of

Kira Dineen:

genetics with DNA Today Podcast.

Narrator:

n-lorem is a nonprofit committed to discovering and

Narrator:

providing personalized experimental treatments for free

Narrator:

for life to patients with genetic diseases that affect one

Narrator:

to 30 patients worldwide, referred to by n-lorem as nano

Narrator:

rare. Many of these patients progress and die without ever

Narrator:

achieving a diagnosis. This is where n-lorem comes in. They do

Narrator:

the impossible by providing hope and for those that they can help

Narrator:

free lifetime treatment. For more information about n-lorem

Narrator:

or today's episode, visit n nlorem.org. Any questions can be

Narrator:

sent into podcast@nlorem.org search n-lorem on Twitter,

Narrator:

Instagram, YouTube, LinkedIn and Facebook to connect with us.

Narrator:

Please rate and review the podcast on Apple, Spotify, or

Narrator:

wherever you listen. This truly helps us climb the charts and

Narrator:

allows others to find the show. This podcast is hosted by Dr.

Narrator:

Stan Crooke. Our videographer is John Magnussen of Mighty One

Narrator:

productions. Our producers are John Magnuson and Kira Dineen of

Narrator:

DNA today. Thank you for listening

Show artwork for Patient Empowerment Program: A Rare Disease Podcast

About the Podcast

Patient Empowerment Program: A Rare Disease Podcast
Learn about Nano-Rare Diseases with biotech titan Dr. Stan Crooke of n-Lorem.
Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life.

n-Lorem is a non-profit organization established to apply the efficiency, versatility and specificity of antisense technology to charitably provide experimental antisense oligonucleotide (ASO) medicines to treat patients (less than 30 patients) that are the result of a single genetic defect unique to only one or very few individuals. The advantage of experimental ASO medicines is that they can be developed rapidly, inexpensively and are highly specific. n-Lorem was founded by Dr. Stan Crooke, who founded IONIS Pharmaceuticals in 1989 and, through his vision and leadership, established the company as the leader in RNA-targeted therapeutics.

This podcast is produced by n-Lorem Foundation and hosted by Dr. Stanley T. Crooke, who is our Founder, CEO and Chairman. Our videographer is Jon Magnuson. Our producers are Kira Dineen, Jon Magnuson, Kim Butler, and Amy Williford. To learn more about n-Lorem, visit nlorem.org. Contact us at podcast@nlorem.org.

About your host

Profile picture for Kim Butler

Kim Butler