Multiple Guests

• How Luther learned his daughter had muscular dystrophy, and his reaction (03:59)
• The quote that Luther - and his family - lives by (5:41)
• Why Jane's teenage years were harder than most (7:30)
• The medical breakthroughs that led to potential treatments of Jane's disease (11:18)
• Why Luther refers to the lab as a "20-year overnight success" (13:42)
• What Jane is doing now (5:32)

FRANK BLAKE: I want to start first, Larry, by thanking you for all the help you've given for Crazy Good Turns over time, and then ask - what led you to suggest that we feature Luther and Jane's story on Crazy Good Turns?

LARRY POWELL: First of all, I thought it was a beautiful story of a father's love for his daughter.

I thought it was also a wonderful intersection of stewardship of both influence and affluence.

I thought it was an amazing story of persistence, because he's been doing this for 20-plus years.

And then I also thought about the courage it would take for a guy, and Luther, you can correct me on this, but as far as I knew, his background was all a business background, not a science background.

And to step into the world of biopharma had to take, in my opinion, a lot of courage, and frankly, a lot of faith, too.

And it was applied faith. It wasn't just being a believer, it was being a doer.

FRANK BLAKE: Larry, that's a terrific summary, thank you.

And, Luther, first, thank you for joining the podcast.

And maybe a good place to start our conversation is with your telling our listeners how you first learned of Jane's condition.

LUTHER LOCKWOOD: When she was about five years old, her teacher noticed that she didn't get around the playground the same way her peers did.

So she suggested that we take her to a doctor.

Once she was diagnosed, my wife and I are like, "My gosh, what are we going to do?"

It's a fairly rare disease. There are only about 7,000 people, we think, worldwide that have been diagnosed with this.

FRANK BLAKE: That had to be overwhelming and scary.

I want to bring in Jane now, and Jane, thank you for joining the podcast.

What do you remember about this time period?

JANE LOCKWOOD: So I was diagnosed with muscular dystrophy when I was five.

I didn't really know what was happening. Um, I just knew I was going to the doctor a lot.

I remember the gloves that the doctors always wear. I just distinctly remember my dad would always blow those up into little balloons.

I don't remember much from that time.

I guess just growing up, I was always aware that my parents were very dedicated to finding a cure for this disease for me and for other people.

LUTHER LOCKWOOD: Once she was diagnosed, my father-in-law, Hugh McColl, was on the board of the hospital at that point.

And so someone at the hospital came forward and said, "Hey, would you have any interest in funding research to try to come up with a cure for the disease?"

And we had a meeting, it was Hugh and my wife and I went and met with the people at the hospital foundation.

And Jeffrey Rosenfeld was our physician who diagnosed her and he said, "We should study this and try to come up with something to try to help her and thousands of other patients like her."

LARRY POWELL: Luther, in that Bulldawg Illustrated interview I read over the weekend, the quote for you to live by, it's Luke 12:48, "To whom much is given, much is expected."

How's that motivated you in this whole process, Luther?

LUTHER LOCKWOOD: Well, that's something Hugh says a lot.

He was told that when he was a kid, and my wife's family really believes in that, and I really believe in it as well.

I said when we started the company, "If I can help my daughter, we're going to help thousands of other people at the same time. And if we can be a role model for others in that process, so be it."

FRANK BLAKE: Thank you, Luther.

Jane, as you were growing up with this condition, what was it like? How did it impact you?

How did other kids treat you; did they treat you differently?

JANE LOCKWOOD: The teachers obviously always knew when I was going into school.

And in second grade, my mom said that the kids were starting to ask more questions.

Like, why doesn't Jane have to do PE? Like, that's not fair.

The teacher came to my mom and said, this would be a good time for Jane or you guys to tell the other kids, because in second grade, the teacher said, being different is cool.

And then once you get to third grade, being different is weird.

And so she kind of convinced my parents. And we're like, hey, this is like the right time to tell everybody.

So I started, my parents would write me a letter and I would bring it to my PE class each year, starting in second grade.

And I would read the letter. And it would just explain what limb girdle muscular dystrophy is at a baseline level for that age group.

FRANK BLAKE: How did things change as time went on? Did the condition worsen?

LUTHER LOCKWOOD: It's a tough thing to deal with.

I would say when she was a teenager, she was mature beyond her years because she would realize that, "Hey, I can't put myself in a social situation or a situation where I could end up in a bad spot."

JANE LOCKWOOD: So I definitely feel like there were moments when I was a teenager where it affected me more, just, you know, being a teenager, things are already hard. And -

FRANK BLAKE: That's already pretty fraught. Yeah.

JANE LOCKWOOD: Right. Right.

You add on an incurable diagnosis that you don't know what's going to happen. When are you going to be in a wheelchair?

Like, what's that, what's your life going to look like?

So that I feel like being a teenager, that was probably the hardest moment. But, um, but other than that, I try not to think about it.

It started progressing more in college and then during COVID more rapidly progressed.

I now use a walker inside my house and a wheelchair outside of the house, just to make sure that I don't fall, um, and get hurt because that's just would not be good.

The recovery would cause further deterioration.

FRANK BLAKE: As Jane was living with this disease, Luther and her family worked to get their research laboratory off the ground.

Luther, tell us about the McColl-Lockwood Lab, and how it's progressed over time.

LUTHER LOCKWOOD: We started it on a confidential basis.

And then I guess once our daughter got to the point where the teacher would read the letter to her classmates for like, well, this is pretty obvious she has some issues and we should go ahead.

And the people at the, at the Atrium Foundation said, "We could really raise additional money if your family would let us use your name around this."

And so that's when we agreed to go a little more public with it.

And that attracted some scientific talent, and we're grateful.

Dr. Qi Lu has been our chief medical investigator, really from inception.

LARRY POWELL: And Luther, in 2003 you were, if I do the math right, you were in your mid-30s, you and your wife had, well, along the way, total of three kids. Right?

And so you're trying to build your business, you're trying to be a good dad and husband to all three of your kids.

And my sense is that you put a lot of, not just your name on this, but a lot of time and energy in getting this thing off the ground.

How do you go about recruiting the human talent to make something like this a reality, the quality of researchers that it takes?

LUTHER LOCKWOOD: Well, that's a great question.

We were fortunate that Dr. Rosenfeld, we did a global search and we actually recruited Dr. Lu from a research facility in London.

He is of Chinese descent. He went to the University of Shanghai Medical School. And if you do the math, based on the Chinese population, the Shanghai Medical School is like the Harvard of the country.

And so the chances of getting an education from Shanghai Medical School is less than one in a million.

So it's literally the very smartest people in the country.

And at one point, I think we had three other researchers from the University of Shanghai and Chinese was the predominant language in the laboratory.

So I had zero scientifically.

I've learned a lot through this process from Dr. Lu and the rest of the team.

And we have been fortunate that he has come up with multiple breakthroughs from a scientific standpoint in the 20 years that he's been at the McColl-Lockwood Lab.

LARRY POWELL: And then from the laboratory work, Luther, y'all started the McColl-Lockwood Bio Solutions, is that right?

LUTHER LOCKWOOD: That's right, yeah. ML Bio Solutions is the name of it.

And basically the company was to develop technologies that evolve from the McColl-Lockwood Lab.

FRANK BLAKE: So you were able to attract very smart people.

What did they learn about Limb Girdle Muscular Dystrophy, and how to treat the disease?

LUTHER LOCKWOOD: So, I guess about six to seven years ago, the team actually came up with two breakthroughs.

The first, we had a gene therapy, and at that point we were very fortunate, we had another researcher.

Dr. George McLendon actually was the head of all research at Atrium Health.

And so Dr. Lu and our lab rolled up to him and he recognized some of the IP that was being developed.

And he took, I guess our first idea, which was the gene therapy research.

And some of the IP was jointly held with the University of North Carolina medical system 'cause we had funded research there as well.

And Dr. McLendon actually quit his job at the hospital system and took an 80% pay cut to come help me start the company.

And so we licensed six patents from the hospital, and then Dr. Mclendon and I kind of hit the road and we had several interested investors to fund a clinical trial.

LARRY POWELL: Luther, where is ML Biosolutions in terms of the FDA process now?

LUTHER LOCKWOOD: So basically, we're in phase three, which is the last phase. This is a pivotal trial.

And so the way the trial worked, we started off kind of phase zero one where we gave the drug to healthy patients.

And it's, to be honest, mostly college students that we pay to just make sure the drug's safe.

We're not trying to check if it's effective in fighting the disease or not.

So we've published research that says that yes, the patients in phase two did improve once they started taking the drug.

And so she's been a beneficiary of that and there's some kind of quality of life things that have actually helped her quite a bit.

Some simple things you wouldn't think about that now she can hold her arm up higher to put on deodorant than she could before 'cause she has weakness in her shoulders, or she can hold a hairdryer to dry her hair.

So some things like that, that we just don't even think about that are kind of challenging for her to do.

LARRY POWELL: By the time you get finished with the phase three trials, even with the expedited review process, you will have spent close to 25 years of your life with this.

Can you just sort of walk us all through the time, the energy, the ups, the downs, lessons learned, all those as you reflect back on this process, Luther?

LUTHER LOCKWOOD: Yeah, we're not across the goal lines, but I would say I've had a number of people make comments through the years to say, "That the chances of your family kind of bringing this to where we are have got to be less than one in a million, to have a daughter who's diagnosed pretty quickly."

I've heard stories that it's taken people 10 or 15 years to figure out exactly what was wrong with them, to having the means and the relationships and the resources to fund a research lab.

And then have the research come up with not one, but two potential, not necessarily cures, but treatments for the disease, we're very fortunate to have gotten as far as we have.

And that's why I say jokingly, we're a 20-year overnight success, that we've been at this a long time to get to this point.

And my wife, Jane, has played a big role in that part of our family mission to try to help others who are dealing with this disease, whether it's the individuals or their family members that are working through this.

Her primary role today is she's the caregiver for our daughter.

Our daughter now is 27. She's getting ready to enter law school, which we're excited about. It's been her lifelong dream to be a lawyer.

She didn't think, from a stamina standpoint, she could actually go to law school after she graduated from undergrad, because one of her coping mechanisms, as she's gotten weaker and...

She went to Wofford College, she chose to go to a small school where she could physically get around the campus once she got out of high school.

But as COVID hit, she started to decline fairly significantly and she's in a wheelchair most of the time now.

Any time she leaves the house, she has a motorized wheelchair that helps her get around.

So, one of her coping mechanisms, since the actual how the disease works, her muscles are weaker and they're not going to necessarily get a lot stronger.

For a healthy person, we eat and rest and our muscles regenerate after we exercise.

And so she has, I guess the simple way to explain it, there's an enzyme that her body doesn't produce the way normal people produce.

And so she has a protein called FKRP that she does not metabolize properly.

So, the team at the research lab cloned a mouse that has exactly the same muscle mutation that our daughter has.

They learned from a group of researchers in Japan that was doing some other studies that, "Hey, this might be a way, if we give the mice this catalyst, maybe they could have metabolize the protein."

And so we did that with the mice and the mice got stronger.

So that was our preclinical data to say, "Hey, it worked in the mice."

Mice aren't people, you still have to prove it to people and make sure it's safe and that type of thing, but that was our preclinical data.

But back to her coping mechanisms. If she eats, it doesn't help re-nourish her.

She sleeps a lot more than most people do.

She's asleep, I'd say, or laying in bed probably 12 to 14 hours a day.

And that's really not very conducive with first year of law school.

FRANK BLAKE: Jane, how does it feel to be a graduate student now?

JANE LOCKWOOD: I'm very excited so far.

It hasn't quite, quite sunk in that it's all happening yet.

FRANK BLAKE: Why out of curiosity, did you choose to go to law school?

JANE LOCKWOOD: In eighth grade for our civics class, we had a, uh, judge come into our class.

And we conducted a mini mock trial and I got to be one of the attorneys.

I can't remember which side I was on, but I just kind of fell in love with that.

And then we did something similar in college and constitutional law and I loved it then too.

FRANK BLAKE: And how does it feel to be helping others who are affected by your condition?

​​JANE LOCKWOOD: I don't know if I've necessarily done a ton to help.

I feel like it's more my parents, um, that have been driving this.

As I've gotten older, I've definitely been more involved, but it's definitely all because of them that we are where we are today in terms of, you know, having a, uh, a lab dedicated to this and having a company that has successfully started a clinical trial.

So I'm just very grateful for them and all the hard work that they've put into this.

I truly owe just everything to them and to my family for dedicating their lives to this.

FRANK BLAKE: Now for every show I always ask our guests about someone who's done a crazy good turn for them.

So I'll start with you. Larry, who would you signal as having done a crazy good turn for you?

LARRY POWELL: When I was in 10th grade in high school, Frank, I had an English teacher named Julene Jones.

And she was getting close to retirement, but I turned in a paper and sort of halfway put any effort into it, and at the top of it, she wrote, "Mr. Powell, you are better than this."

And then we talked about that.

And that's almost 60 years ago.

I remember her helping me understand that I could be more than I thought it could be.

And maybe she spent an hour or something or even less, but just the encouragement and her sort of expanding my parameters and my paradigm, I carried with me the rest of my life.

So that was truly a crazy good turn for-

FRANK BLAKE: That's a great example. That's a great example.

I get a lot of answers that go back to a teacher.

I tell them to my daughter who's a teacher, so I think there's reassurance for all the teachers out there.

LARRY POWELL: Yep.

FRANK BLAKE: Luther, how about yourself?

LUTHER LOCKWOOD: I would go back to a friend, Mark Oken, who I guess he had worked for Hugh when he was at Bank of America and later became CFO of the bank.

And he recognized, after Hugh retired from Bank of America, that this was important to him.

And he really got a group of Hugh's leadership team, retired executives, and they raised a significant amount of capital to really get the McColl-Lockwood Lab launched and off the ground.

So, he got Chuck Cooley involved and Ken Lewis and some other people that really helped move the needle, and we wouldn't be where we are today without their generosity.

FRANK BLAKE: Luther, thank you for that.

This is just a great story of commitment and dedication and thank you for everything you're doing for your daughter and for thousands of other people who suffer from this disease.

Is there something that, if listeners were interested in following up and understanding either more about the disease or the efforts of your research team, where should they go to find out more?

LUTHER LOCKWOOD: Yeah, I think if they just Googled the McColl-Lockwood Lab for muscular dystrophy research, they can learn more about the research that we're conducting in Charlotte.

And McColl is M-C-C-O-L-L. And then the website for our business is mlbiosolutions.com.

And the scientific research that is updated from time to time is posted there, and that website is managed by BridgeBio.

FRANK BLAKE: Well I hope people are going to be looking back on this as one of the great crazy turns as you help a lot of people with a really tough disease.

And so thank you, Luther, thank you both, thank you Larry, and thank you very much, for all of your efforts.