The AVM Research Foundation

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest Talk News.

Information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. So today we're gonna be talking with guest Sherry Logan, who started the AVM Research Foundation with her husband Mark.

And we're gonna end with a short discussion on the second half of chapter one of our current focus book, suffer Strong. By Catherine and Jay Wolf. But before we get started, I wanted to let everyone know that the American Stroke Association, which is a [00:01:00] branch of the very well-known American Heart Association, has moved up their timeline for their Stroke Hero awards and are now accepting nominations through December 6th of this year.

now earlier. My son won the pediatric award for 2022. So do you know another stroke hero? The American Stroke Association's Stroke Hero Awards annually recognize everyday people who have shown resilience and used their experience as a stroke survivor, caregiver advocate. Or group to help others. So go on their website, www.stroke.org/hero awards, and consider nominating yourself or someone you know by December 6th.

The AVM Research Foundation's mission is to raise funds for AVM awareness with their biggest goals, to create a way for early detection and to find safer treatment for those affected by brain av. The foundation was created after Ryan Logan, who was 11 years [00:02:00] old at the time, was told by doctors that no treatments were safe for his complex grade four brain AV m.

The doctors simply told the Logan family to let their son Ryan simply live his life and a year later. Ryan suffered a brain hemorrhage. Sherry and Mark don't want any more families to have to go through what their child and family have gone through. So they started the AVM Research Foundation in Houston, Texas with the help of Ryan's doctor, Dr.

Rock Chen, who specializes in brain vessel disease. Together they are determined to find a cure for brain AVMs. This is their story. Hi Sherry. Thank you so much for being here today. 

Sherri Logan: Well, thank you for having me. 

Raylene Lewis: So I understand that you started the AVM Research Foundation, is that right? 

Sherri Logan: Yes. My husband and I founded it in 2016.

Raylene Lewis: Can you tell me a little bit about what brought all that about? 

Sherri Logan: Yes, so my son, Ryan, he is now 20, [00:03:00] but when he was 11, actually really more like 10. He'd gotten a concussion in in football, but several months later it was still kind of hanging around and. He just kept complaining, kept complaining, and they were like, well, he shouldn't really be having these headaches he was having, but they were extreme headaches and they weren't all the time.

It was probably every six months, to be honest. For 18 months, we went to probably every doctor known to mankind. and no one could figure it out. We finally went to this one doctor and he said, go to this neurologist. He will find out what is going on. And I knew something was going on because then he kind of stopped having the headaches, but every day he would have, I can't see outta my left eye for like a little bit and I'm thinking that's just so weird.

But, you know, finally had this neurologist diagnose. That day he called me into the office and said, yeah, there's something wrong with his M R I and M R a. And basically he was diagnosed with a grade four Right occipital AVM, [00:04:00] but it was too big to do anything. They said it was too dangerous to do anything, and it was diffused all through his whole head.

So 

Raylene Lewis: can, can you tell me what does diffuse mean? Well, because there's two different types of AVMs, right? There's ones that are really compact. Yeah. And then a diffuse AVM is not, is that, 

Yeah, it's, 

Sherri Logan: it's basically has a bunch of little like feeders kind of just hanging around everywhere. Not a perfect ball, you know, kind of tentacles, I guess you could say, just kinda everywhere.

And so it just makes it that much harder to remove. Plus it was in his vision area and all that. So we started saying, okay, what kinda, what kind of, you know, research is out there and really. There wasn't really hardly anything. And there definitely isn't one place that just is doing a v m, you know, a lot of them do the hemorrhagic strokes and the AVMs and the aneurysms, cuz [00:05:00] they really all go together.

And Ryan ended up having so many, they lo they just stopped counting at eight, but eight aneurysms. Oh yeah. But yeah. So it was, it was scary. What happened was you know, we started kind of looking around, you know, the doctor said, I, I wouldn't do anything because the risks are pretty good, you know, that something's gonna happen.

Or if you wait, technology might come around. But that's, that's just scary because that's a ticking time bomb in, in your kid's head. 

So, yeah, you even went to, you even went to the Texas Children's Hospital, to the research 

department. Yes, we were going, I used to volunteer there as a Bluebird pediatric neurology clinic.

Ironically a friend of mine was really into it and she it just sounded like something, you know, that I'd like to do. So I was, she said, well, lemme after he was diagnosed, she said, let's go down and talk to the head research guy, Texas children. So I was like, sure. You know, kinda, kinda just maybe [00:06:00] asking him questions.

And so I went into his office with my friend and. I said, well, have you ever heard of an avm? And he said, no. And I thought, well, there's definitely no research going on here, , 

Raylene Lewis: not if they haven't heard of it, . 

Sherri Logan: So, which was, didn't surprise me. I said, well, how, how do you get, like, research started? And he said, well, honestly, basically you just get a bunch of parents that get together and decide that they're gonna do something.

That's kind of like, okay, I guess that's what I'm gonna have to do. Then he had back to how we kind of formed it, he had a brain bleed spontaneously, a small one in 2012. So he was diagnosed in 2011, and then he had a brain bleed in 2012 and he ended up spending three days in the hospital and he, it took him about a month, but he recovered pretty much fully.

thank God. So then the doctors were like, you know what, we really need to do something about this. This thing's [00:07:00] unstable. And we went on the search. Again, we didn't wanna find someone that was like, oh, I'll operate on 'em. You know, I mean, but we just kind of wanted to know what our options were out there.

Just reach even further. Cuz it's really a horrible situation to have to decide what to do. Pretty much, as you know, you can get 10 different doctors with 10 different recommendations. So , absolutely, it's, it's really, it's really just sad that you just have to take the information that you have and make the best decision.

As a parent, we had talked to the pediatric neurosurgeon and he was not interested. He was, he focused mostly on cancer in children. Right. But he said, I bet you, Dr. Rock Chin would be interested. So we kinda had that in our ear and he ended up being Ryan's. Long story short, he was on the operating table to do the embolization.

The AVM shut down by itself. You know, he was in a coma for six weeks. while he was in i c u in the Pediatric Intensive Care unit. My husband started talking to him. Dr. [00:08:00] Chen said, yes, I, I've been wanting to do research on AVMs for at least 10 years, but I did not have the resources, the money, so we just thought, you know, at this point we thought his AVM was gone and it probably wouldn't help him, but we wanted to help others and to not let this be in.

and do, you know, try to help. It was kind of our way of coping. So anyways, that's how, that's how it began. Still, just my husband and I pretty much, we do a golf tournament every year, and then we have a crawfish boil in the spring. So And 

Raylene Lewis: this money from both of those, or, or what goes to fund the AVM Research Foundation?

Sherri Logan: Yes. We don't, we don't have any paid employees. It's, it's really not Cause we don't want to, it's just we can't afford it. . . So all the money goes straight to our AVM research. He's hired two PhDs and he's hiring more. At this point, since 2016, we've been able to give [00:09:00] him $1,030,000. Wow. 

Raylene Lewis: Yay. Yeah. What an accomplishment.

1 million. 

Sherri Logan: Yeah. It, it sounds like a lot. And it is, but the research is, it's just so expensive. It's, it's just silly. Anyone that's ever given. Our foundation. Thank you. We need it. It's really, it's exciting because a, a couple of years after we started, Dr. Chen was able to be the first person in the entire world to make a true AVM in an animal model, which just happens to be a mo, a mouse.

Raylene Lewis: So like, so he created one on purpose. . 

Sherri Logan: Yes. And this one is just like the one that would be in a human being. So he knows that the AVMs are formed between four and eight weeks in utero. Now there are very rare cases that are genetic. Mm-hmm. like 1% and it's like the H H T and, and a couple of other different things, but that's extremely rare.

Raylene Lewis: Yeah. We're also one I know is another 

Sherri Logan: one. Yeah. [00:10:00] Yeah. And so most of them are not. , but it is a gene that goes haywire. Not necessarily pass it down from generation to generation, but we all have genes and they turn on and can be turned on, turned off. And this one just goes a little crazy. And I think of it as the, the David and Goliath almost, because we're just a small, we're just mom and dad.

We don't have much , but I just feel like you. God's really blessed us and working really hard through our foundation. It can't go fast enough. Cause it seems like most of the time it's children that you hear about and, and Dr. 

Raylene Lewis: Chen's goal, his goal, if I understand when I talked to him, was to, once he knows how to make them, then try to come up with a way to reverse engineer to make them go away.

Is that right? 

Sherri Logan: Yes, yes. So if you, if the gene can be turned on, it can be turned off. So they're trying to find the sequencing of events, you know, that kind of [00:11:00] go to turn it on and to turn it off so that maybe, you know, a medication or something can make it turn it off, and then it can just shrink by itself.

It'll just basically disintegrate. That would be amazing. I know, and another thing that I'm really, really an advocate for is earlier detection, because if you don't know you have it, you, you can't do anything about it. And that's just how most people find out, as you know. 

Raylene Lewis: Yep. Kyler was 15 when his AVM ruptured and Yeah, we had no idea prior to that.

Sherri Logan: No, no. He's, he mentioned this one time, I do not know if this is, I mean, I don't think he's, he's working on that part yet, but, is thinking, you know, it could be at one point where we swab a baby's mouth with the Q-tip when they're born and you'll be able to see, wow. You know, he's like that. That's kind of what the goal is, something like that, because you know, you can't be.

as, [00:12:00] as much as I want to, I don't think this would ever happen. Yeah. Your a newborn baby. We're gonna put 'em under anesthesia and put 'em in an m r I machine. An mri. Yeah. 

Raylene Lewis: practical application there. Not so much. 

Sherri Logan: No. Yeah, no, no. Mom was gonna do that, but . So hopefully something like that will be available 

Raylene Lewis: now.

Really important. Mm-hmm. , tell me how Ryan's doing. So he was gonna, he was 11 years old, right? Yes. When you found out. When he was 12 is when he had kind of the same thing, like kyler, more of a micro bleed, one that you could recover. Oh, yeah. Fairly well. And then that's when they said, okay, we're gonna do embolizations, and then after a couple embolizations we're going to remove the avm.

And so it w Yes. It's when they went in for the embolization, that basically his AVM just kind of like exploded in his head. Is that what happened? Basically, 

Sherri Logan: yes. Mm-hmm. , what a blessing that we had Dr. Chen there, you know, to be able to save him literally on the operating table. But yeah. 

Raylene Lewis: How is [00:13:00] Ryan now?

Sherri Logan: You know, I look back at videos and think, wow, I don't even hardly remember those days because probably I like to forget about it, . But he's doing good. He does have he's got drop foot. On the left side cuz the avian was on the right side. He can't use his left arm still, and it's been eight years this year.

But he as far as he has short-term memory issues spatial awareness and motor planning, such as he would look at his toothbrush and know, hey, , this is to brush my teeth, but I don't know the steps to do that. Like, what do I do first? Like that kind of stuff. That's what motor planning is. And that's, that's mainly his main problems.

He's had four brain surgeries total. His last one was in 2019 where they removed the entire a v m finally, and they also separated the right side of his brain from the left side of his brain. because he had been having constant seizure activity for years. No medication was stopping it. And so [00:14:00] basically if you continue to do that, as one doctor put, it just kind of turned a mush after a lot of years of constant seizure activity.

So he doesn't have seizures anymore and he is AVM free anyways. So he had to learn to walk and talk and eat and go to their bathroom. So he didn't talk for five months. He didn't walk for seven months. He had a feeding tube and was in diapers for a year. So he has come a long, long way. And we have tried, I know we talked about this, but we have tried everyth, thing you could imagine known to mankind for this child.

And right now we're doing stem cells and that's, that's really helped actually. His memory and his cognitive issues. So, but Okay. How 

Raylene Lewis: did you decide you know, what to do? Because I think anytime there's a brain injury, as parents, we just 

Sherri Logan: freak out because I'll never forget one of his neurosurgeons, Dr.

Day, I was like, I feel like [00:15:00] I'm darned if I do, and darned if I don't, I don't know what to do. And this doctor said, you know what? You're not, he said, , what you do is you take all of the doctor's advices and you put them all together, like you know, on paper, whatever you wanna do, and he goes, and then you make the best decision that you can make with what you are given and with what you know.

And he said, and if he has a brain bleed before he comes in for the surgery or you. If he, something happens during the surgery or whatever he says, just know that you did the best you could in what you thought was in the best interest of your child. And that really gave me a lot of relief. And I thought, you know what?

That's true. I mean, I can't control everything and this is what we chose to do and it just made me feel better. We're eight years into it, so. [00:16:00] We are done. We were kind of done with trying every kind of modality that the doctors knew about. We started branching off into, you know, more natural, you know, we have a hyperbaric oxygen chamber that has really helped.

with his spasticity and his cognition. The best thing is talk people that have been down that road and see what all they've tried. And you know, every person's different too. What works on one may not work on another. So 

Raylene Lewis: if somebody wanted to learn about the A V M Research Foundation, how would they reach you?

What's the best way for them to, to, to, to learn about? Yeah. You could probably go 

Sherri Logan: to our website and it has contact information as well on there. And our. , www research, and then the number four Ryan, r y a n.org. And it's funny because it's really not for Ryan, that's what we originally named it, but it's really for everybody that is diagnosed with this rare disease because you [00:17:00] know, it's not gonna help help my son.

But I mean, if it could just help one person, it would just be amazing. I 

Raylene Lewis: know, I know you're trying so, so very much. And I just wanna say that definitely the a v m and Aneurysm community, thanks you and your husband and your whole family for all that you guys have been doing to try to help find a cure for this rare disease.

Sherri Logan: We're so happy and blessed to do it. And there's a lot of other good organizations like, you know, TAF and the Joan Niro Foundation and all them that are incredible stuff too. So it's a group. 

Raylene Lewis: That's right. It takes a village. Right? It does. It takes a village. Well, thank you Sozo very much for joining us today, Sherry.

I really appreciate your time and all the best luck to Dr. Rock Chen and and and the team there for the AVM Research. Oh, thank. Thank you. Thank you. Thanks for all you do too. Now in the second half of chapter one, Catherine says that disability can seem like [00:18:00] weakness that keeps someone from living their best life, but that isn't true at all.

And that for her telling her story helped reinforce the healing of her own broken heart. I'm an optimist for sure. But honestly, I identify most as a realist and many times I have felt like the experiences that my family was going through was much more in line with being cursed rather than being blessed.

It's especially so when they're little reminders of how my life before kyler stroke, before the devastating, the ticking time bomb can't be. Came to be our reality. The little reminders of how things used to be and the reality of how some things are always going to be from now on are totally different and not what I ever wanted, and this it threatens to bring me down mentally.

But I've been working really hard to change my mindset, to regroup with what I know to be true and to find a new path, [00:19:00] focusing on what is the next right thing to do now. And Catherine states in chapter one, when you or your loved one's body and brain doesn't work as it should, the trivialities of life tend to fall by the way.

And I would say this is so, so very true. Even with my work before Kyle's stroke, I would take other people's problems and make them my own. I would care about things that now just seem trivial and stupid. What I worry about has changed dramatically as well as how I view the world and how I think about what is important.

I think that this is the way it is for pretty much anyone who has dealt with suffering. I can't deny that the change in my priorities have definitely been a good thing out of a bad situation. Today's quote is by Anne Landers. She says, nobody gets to live life backward. Look ahead. That's where your future lies.

[00:20:00] Opportunities are usually disguised as hard work, so most people don't recognize them. I always like to end our time together with a motivational song recommendation. I don't play the songs because of copyright laws, but there have been many times on this journey where a song really spoke out to me and helped me with my day.

Today I'm recommending you check out the song Fight song by Rachel Platon from her 2016 album Wildfire. Whether other people Believe it or. Even with wrecking balls inside your brain, you know you still have a lot of fight left in you. So play your fight song and be strong. And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational quote, don't be shy.

Share it in the comments and let us know. And if you'd liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone. Take care of y'all.