Decoding NF

Shane: Hi everyone. This is Decoding nf.

My guest today is John Manth. John is the father of Leah Manth who was diagnosed with NF two in 2007 when she was just seven years old. John and his family are dedicated to finding meaningful treatments and a cure for NF2. John is the current president of the board of directors for the NF Network as well as chairman of the board of directors for NF Northeast.

John has previously served on the board of directors for NF2 BioSolutions as well as Advocure NF2. Since Leah's diagnosis, the Manth family and friends have raised a million dollars and sponsored 13 NF2 research studies. John is a staunch advocate for federal funding for NF research and assists in coordinating, training, and mentoring NF families attending the NF Network's annual trip to Washington, D.C.

He has extensive experience in fundraising, non profit organizational leadership, advocacy and NF outreach. John, his wife Linda, and Dr. Scott Plotkin co-wrote a booklet entitled "Understanding NF2," published by the NF Network. He has also written articles on various NF topics.

Additionally, he has presented at numerous NF symposia and has facilitated many NF family and patient discussions.

John teaches undergraduate courses in violence, global crime, and comparative criminal justice at Hilbert College in Hamburg, New York, as well as a criminal justice career program to high school students. He holds a bachelor's of arts degree in criminology from the University of Maryland and a master's of arts degree in criminal justice and education from Buffalo State College.

Prior to this discussion. I hadn't really considered a lot of the details related to service dogs that John and I talk about in this interview.

So I think there's a lot of great information , and I hope there's a little something for everyone here. Before we get started, though, I just have to get the disclaimer out of the way.

The content in this podcast is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no doctor patient relationship is formed. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and listeners should not disregard or delay in obtaining medical advice from their doctors.

Now that that's out of the way, I hope you enjoy my interview with John Manth.

Welcome, John. Thanks for taking the time.

John Manth: Thank you

Shane: I want to start a little bit with some background just to set the stage a little bit about you and your connection to NF. So maybe give a little bit of history about where you come at this from and a little bit about your background.

John Manth: Sure. My daughter Leah was diagnosed 17 years ago when she was age 7 with neurofibromatosis type 2 and right off the bat she had um, a large uh, tumor load in her spine and brain and it was quite a shocking diagnosis. We didn't know anything about it like most people with NF one and two and our family immersed ourselves into the NF community and we became very active with NF Northeast which led me to the NF Network.

I've been working with both organizations for a long time And my daughter is now 24 years old, and has been living with NF for 17 years.

Shane: And maybe talk a little bit from the perspective of when you first started to get the idea about maybe using a service dog with Leah.

John Manth: Yeah, so what happened was, for those of you who don't know what NF is, NF2 affects your hearing is the telltale symptom of NF2 is that you get a bilateral vestibular schwannomas. So these are tumors that are on a cluster of nerves that is your balance nerve and your cochlea, your hearing nerve and your facial nerve.

And there's a couple other things in there. And because these tumors as they grow, they suffocate the nerve. And about 95 percent of people with NF type 2 will become deaf in their lifetime. So when Leah was in high school, she had one of the VS's on her left side removed and became deaf. She, we had to go out to Los Angeles, had a tumor taken out and her other tumor was consistently growing.

And we were told that she will be deaf probably within two years. So she was probably, I would say, 17 then. So we started looking for things. You know, We're going to learn sign language. We're going to learn she needs to learn lip reading. What devices can we use? And we happened to go to an NF symposium in Michigan and we heard a woman speak who had a service dog.

And it was really life changing for Leah and she was very excited about it. And we started looking at the possibilities of having a service dog to help her with hearing and balance. So that's what we did. That's how the process got started.

Shane: So the primary of disabilities that a service dog helps with in her case is for the vestibular problems with her balance. How does, um, , and it's Dasher,

John Manth: Yes. Got to introduce Dasher. I wish he was here. He goes to work with Leah. So they're at work right now. But yeah, I can tell you all about Dasher. So we can spend an hour talking about him. He's part of the family.

Shane: Yeah, no, it's okay. I'll a page about on the website. uh, So we can get his bio in there and

John Manth: there you go. So what he does is at night, Leah, so when you lose your vestibular system, your balance system, your eyes take over for that.

And people with NF2, they lose that balance system at a very slow but consistent rate. And it gives their body a chance. The problem is when you take away your sight, like at night, your balance gets a lot worse. So I can see Leah walking fairly normal during the daytime and at night you would think she was drunk.

That's that's how I can describe how she walks. She walks like she's falling down. So what Dasher does is he has a special vest and he's about a 90 pound Golden Lab that she has a hand on and she can lean on him. And he's really good at night. He knows to, he walks closer to her. If they're walking somewhere and there's a curb, he stops and lets her know there's a curb and all this stuff.

So it's pretty cool. He's trained very well. And the hearing part of it, he is there for emergencies. The everyday stuff, like if you were to come over Shane and ring my doorbell, I would hear you and come get the door, but Leah wouldn't hear that. Dasher would hear it though. He would go to her and he would alert to her that the doorbell is ringing.

He has different alerts for different things. And then she would go answer the doorbell or her cell phone, but with cell phones she has vibration and stuff. Our smoke alarms. I'll set our smoke alarms off about once a month just to test him and he goes right over to her right away and he, falls to the ground and she knows that's if there was a fire you want to get low so that's his signal to her so it's really cool and he even to the point now he rides in the back seat of her car and if he hears a siren he taps her on the shoulder if he can reach her he taps her on his shoulder so she knows I better pull over there's an emergency vehicle behind me so it's it's pretty cool

Shane: I want to circle back a little bit to, the training process on both sides, both Leah and Dasher, but before I just, there was something I wanted to touch on that I think is just so interesting about neurofibromatosis in general. It's this note that you made about how the progression is slow enough to where the body kind of adapts where she has adapted to it in a lot of ways.

And it's amazing how that's the case, like across the board, with, NF1, especially in pediatric patients anyway, they're growing up like Gage's physical therapists are constantly surprised at his range of motion considering how severe his scoliosis is.

And nobody can really explain it because he has, tumors all over his spine all over his nerves. And a, neurosurgeon looking at that would assume that he had significant loss of function below the waist pretty much.

But he doesn't, he's fully, fully mobile. And it's just so interesting. The best way they could explain it was just, oh it's slow moving. And so the body just adapts to it. And obviously there's a limit to that as, you find with vestibular schwannomas, of course.

And there are limits to how much the body can adapt, but it's just amazing how much it adapts right up to that point.

John Manth: I couldn't agree more. I think a lot has to do, I believe, with the slow progression of the tumor growth. Unless it's having a growth spurt, most tumors in NF are fairly slow growing. I think it gives the body, which is an amazing thing in itself, a chance to work around some of those deficits.

And I totally agree. She's amazed me through her life, what she's been able to do with spinal tumors and brain tumors and still able to, in high school, run track and stuff like that. So yeah it's I'm with you. It's cool.

Shane: It's like a continual lesson not to let the disease define their capabilities and let them define their own capabilities.

Throughout my life as a parent with him, I've learned to just let him define his capabilities, let him do whatever he's going to do. He knows, he knows his limitations or he'll find them quickly and not to artificially place limitations or put the bumpers up on every activity, because then what can happen is, you know, what we never wanted to engender in our son is that he couldn't do something, just because we told him it was a limitation that he had. We wanted him kind of, you know, and I think that is such an important thing because It's so scary as a parent with any of these diseases.

Shane: It's it's such a scary thing. It's such a, there are so many unknowns all the time. You can never know everything. And so there's this desire to just want to put them as much of a cocoon as you can.

John Manth: No, you're so right. You want to protect them, right? That's our job parents. But no, I think that what you just said is great advice for any parents of anyone who has any form of NF is let them still be a kid and let them let them define themselves. It's great advice.

Shane: Okay. So there's a couple things I want to cover, I want to get into like the specifics, the legalities of service animals and all that kind of stuff that you probably have had to learn throughout this process and how you figured it out. But I think one thing I want to touch on, 'cause it flows right from the conversation we were just having about Dasher and the way that he signals and stuff, is I imagine there's a, of course there's a training process for Dasher.

But I imagine there was a training process for Leah and Dasher and for Leah to learn all the signals and all that kind of stuff as well. Can you talk a little bit about what that process was like?

John Manth: Absolutely. So we got Dasher from an organization called Four Paws for Ability. They were one of the few organizations in my search that we found that A trained service dogs for children, and B, did hearing and balance dogs for children. So it fit perfect. So they breed dogs. They do it a little bit different there.

For there's this kind of misnomer that you can take your family pet and make them a service dog and it's probably not very practical. More or less you have to go through an agency and you're not going to even meet this dog until they're trained. So for Dasher's sake we had several interviews.

It was quite costly. I can go through the process too if you want. And once she was selected to get this dog, We were put on a waiting list and they were breeding dogs constantly. They have a whole breeding center in Ohio and they had different breeds for different types of things. And they knew that Golden Labs work really well for hearing and for the type of stuff that Leah wanted and which they knew they wanted a dog a little bit bigger.

So when Dasher was born and his name's Dasher because he was born in the reindeer litter, which is pretty cool. He was born two days before Christmas and there was nine males in the litter, no females. And they named him after every reindeer in the order they came out. So Dasher was actually first was Dasher Prancer, Donner Vixen, et cetera.

So when Dasher was born, they have a group of volunteers and the first thing they do is they hold these animals and they're constantly giving them. Human contact. I always say Dasher is a lot more human than he is animal. He is, he's a dog snob. He can't stand dogs. They bark, they're mismannered and it's hilarious watching him with other dogs, but you bring some people in the room and he'll work the room like no one else.

So he started getting trained right off the bat. It's a lot of obedience training. It's a lot of actually the potty training because you're a service dog. You can't go to the bathroom when you want. You have to learn to hold it, which is awful to think about. But in certain situations, if Leah was in college with him and she had a three hour class, She would make sure she walked in beforehand and stuff, but if he had to go during that class, he knew he had to lay there and wait until class was over.

So there was training with that, and then once they get done with that, they'll select the dog for the individual child's needs, and then they start doing this specific training. So for Dasher, it was a lot of that responding to the different sounds, and he had to affiliate the doorbells and the sirens and stuff like that.

And there was a dog before Dasher, and when they were training him for the emergency vehicle sirens, He didn't like that sound and he did not respond well to it, so they had to give him to another child and start another dog, which ended up being Dasher, into the training. So they're constantly trying to mold the correct dog with the correct person.

So after about a year and a half, we got notified that she was assigned a dog and we got an email Actually from Dasher was really cute and with a picture of him introducing himself and stuff and we were scheduled for a two week training course and at Four Paws and it's in Zinnia, Ohio, by Columbus.

Let me just back up a little bit too. So they use different resources for training their dogs as well. They used foster parents. They actually had a foster parent because they knew Leah was going to go to college. They had a foster parent whose daughter was at The Ohio State University, so she took him for a semester and she had him in her dorm So he was used to college life.

So he was already set for that They have a program where the dogs can go to one of the local prisons and get trained there He was his obedience training was done at a prison. So I always said he did time as well. So he's lived quite a life But so once all that's done and my wife, Linda, went to Zinnia, Ohio, for two full weeks of training.

It was literally 14 straight days of training, and that's where they met him, and they had to work with him, and they had to pass a series of tests in order to bring him home. And after three or four days, they brought him to the hotel with them, and he stayed at the hotel. But there was lots of stuff.

They practiced all the different balance things, and the different commands. Little stuff like they had to go to grocery stores, And he had to learn to heel next to a shopping cart, which doesn't sound that hard, but when you think about bringing your pet into a grocery store, and they're running around crazy, he can't do that, he's got to stay right next to her at the shopping cart, and just walk really nice, because she has to hold his leash, and she has to hold a cart, and she has to shop.

Little things like that, they went to malls, they did a lot of outings in social settings. Once that was done They passed and they were able to bring him home and there's repetitive training all the time. We're constantly training him on some stuff because if you don't use it you'll lose it just like we do as humans and she still is hearing in one ear so she's still not using him 100 percent to his capacity.

So I think he loses a lot of his training and we'll go back and we'll do some training with him especially with the smoke alarms and stuff like that.

Shane: Now when you say you go back and do training with him, is that just at home or is that with a trainer from the organization?

John Manth: So that's a great question. We do it at home with ourselves, but if we were struggling or he wasn't picking up on something, there's a trainer assigned to us, even though it's been five, six years now that we could always call and they could help us. We have to recertify him with the organization every year.

We have to have reference letters saying she's using him to his capacity veterinary and stuff. We can only feed him a certain type of food. So there's a lot of law. He's a very valuable animal. We paid 17, 000 for him and that was half of what it cost to train him and breed him.

So he was a 34, 000 dog when we got him.

Shane: Wow. And so you paid half of it. What was the other half? Was that like through grants

John Manth: Yeah, exactly. They get, they're very, they get endowments and the organization has people who will donate and at the time we got them, they were only asking for 50%. Some years it's less than that. Some years it's more than that, depending on how much money they're coming. It's a huge facility. It's actually amazing.

The facility they have there for these dogs.

Shane: And based upon what you know, is it, is that pretty typical from a, like a cost standpoint for a service animal like this, or is that on the higher end?

John Manth: It can vary. I think that's probably on the higher end and that's because they breed their own dogs. A lot of places use rescue dogs. They used to use rescue dogs and they said for every 10 rescue dogs they'd get one service dog. And it was actually, they felt costing them more money to try to screen out all these other dogs.

Then they had to figure out what to do with all these other dogs. So it was difficult. Some places, the woman we met in Michigan who has NF2, she got her dog for free, the organization that she went through. The name escapes me right now, but they actually do it for free. They are very well endowed and they actually get state funding, but it's only for Michigan residents.

So I think every place is different. There's smaller ones, there's larger ones, and you have to find what's really a good fit for you.

Shane: Yeah. You kind of have to do your own research and figure out what kind of resources are available to you where you are.

John Manth: Definitely.

Shane: The next part of the process I wanted to talk about is the long term outlook. You get this very expensive dog and then, you have to report back to this organization.

Now, when you say you report back with like vet records and all this kind of stuff, is that just to the organization or is that like a legal framework that you're under?

John Manth: It's actually a contract we have with the organization. There are no standardized federal. Or state certifications for service dogs. It's crazy. You'd think there would. What they do is they fall underneath the ADA, the American Disabilities Act, and they govern where service dogs can go. We're lucky in the United States, because the ADA has stated that service dogs can go anywhere where their handler goes.

With two exceptions, and one exception is a government facility, which would be like, A prison or sometimes certain hospitals, maybe. So a government facility can, has the option to turn, to say you can't bring them in. The other one actually is a place of worship, which I found interesting, that they have a right.

Now, having said that, Dasher's never been turned away from anywhere we've gone. With the exception of, we went to University of Massachusetts. Gene Therapy Lab. And when they went and gave us the tour of the lab part, they just asked that Dasher stayed in the conference room just for the fact that he had hair and there was a lot of scientific stuff going on.

So it wasn't anything about his behavior or anything like that. But we've really been lucky. Technically, according to ADA they can only ask you two things. What does Dasher do for you? And I think it's the only thing I can ask you. What service does he provide for you? But they can't turn you away.

We've had places try. We've had restaurants say no dogs. And we're always really nice and we're very calm. And we educate them that, this is a service dog. He has a vest on. Here's his certification from his organization and by law you really can't deny access and you won't even know he's there.

He's going to get under the table and he's going to sit there until we're done and he's so well behaved no one even knows he's there half the time so it's fine.

Shane: While we're on the topic of, service dogs and the kind of the rules that regulate them and all that kind of stuff. I do want to touch on the differences between different trained dogs, but I just want to close the loop on kind of the long term outlook. So from the organization that you got Dasher from

is it contractually stated for how long the expected kind of, not lifespan,

but service,

John Manth: It's such a good question Shane.

Shane: not sure what the right. word is

John Manth: No, you're right. At what point did we have to retire them?

Shane: service

John Manth: done their job. Because, that's right, their career. Because you gotta remember, they're working dogs. They're like police dogs and drug dogs and arson dogs and stuff like that.

They just happen to do another service. I think It's dog dependent and really what they're doing. The career expectations for visually impaired dogs is a lot shorter than what Dasher is because they're on, they are on all the time. When a person is blind, that dog is seeing for them.

Every time they go outside or even inside. So I think the stress level for that dog is a lot harder than like Dasher, who spends long periods of time just laying there doing nothing until Leah needs him for something, and she, by the way, she's a social worker, so she uses him other capacities in her job, which has turned out to be like a really cool side effect of having him as he comes in handy sometimes with some of the children she works with.

Shane: Does she have to pay him like overtime for that type of thing? Do you

John Manth: it's funny, the,

yeah, so she works with foster kids and the agency that hired her. I said they should have paid more, but they didn't, but they did give him his own cubicle and a bed, and they provide treats for him, so that's his benefits.

Shane: That's great. But I guess to go back to, do they give you a feel for

John Manth: They really didn't Dasher's breed, the Golden Labs, they end up having a lot of joint issues and arthritis. I think that's when we would have to look at, can he still get in and out of the cars, is easy, and things of that nature. But we really don't have a time frame.

And I wasn't there for the trainings. They might have said something to my wife and daughter at the training, but we've already had him, he's going to be seven now. We've had him over, over five and a half years. Hopefully we have him for a long time and he's ours even when we retire him from his job too.

Shane: That was going to be my next Yeah, does he become a pet after he's kind of

John Manth: for sure. And with all service dogs, they're a pet in addition. That's really cool is that when they're not working, they're just your pet. And a lot of them it's the vest. If you take the vest off and they know they're not working, With Dasher, he doesn't even need the vest to know if he's working.

If she walks outside at night to take the garbage out and he's with her, he's right next to her. He doesn't care if he has his vest on. He knows it's dark. She's got balance issues. I need to do something here. So it's funny. He looks out for her all the time. He watches her constantly. It drives her nuts.

Then he is just always looking out for her. It's pretty cool to watch, to be honest with you.

Shane: Do you need to go back for training with The organization, as Leah's needs evolves, so he's been trained to not just take care of her for what she needs right now, but of course, anticipating, maybe more hearing issues or, maybe more balance issues, from what you said before,

do you you need to touch up his training then, or is that kind of what you're talking about

with

John Manth: I think we, the touch up part, we would do ourselves. But if she needed a different service, so the third thing he does is they call it a companion duty. So he knows when she's in the hospital for surgeries or she's getting, chemotherapy treatments and stuff like that, that he has a role there that he like gets up in bed with her, and he's very comforting in those situations.

And then at home, he'll come over and sit with me, so he knows when and she needs him. But let's say she started developing seizures and we wanted to make him a seizure alert dog, we would have to talk to the agency. probably go back with him. I'm assuming there'd be a cost and we would have to have, I have no idea how many weeks it would be.

We'd have to train him to do a whole nother service then and that would be extensive.

Shane: Yeah, And, speaking of services and the types of disabilities for NF patients that a service dog might fulfill, we talked a little bit offline about how, in Leah's case, it's NF2 related disabilities. So vestibular problems, things like that. But I know you'd mentioned that there's probably even more indications with NF1.

Where, someone might develop disabilities for which a service dog could be helpful. Could you go into detail a little bit on that?

John Manth: Yeah, I know that, just a small percentage of NF1 patients that will have vision issues. So you certainly could have a vision and visually impaired dog. The whole mobility issue thing and that's with NF1 and NF2. There was dogs that were being trained to open doors for people. It was amazing.

People who were wheelchair bound. Autism. I know there's a relationship with NF1 and autism. So they were training specific dogs to deal with autism. It was actually a beautiful story. They were all in I would describe it as like a gymnasium and they were in, they were bringing the dogs in one at a time and they were saying, Oh, and this next dog is going to be Dasher Manth and he's here for Leah.

And they brought the man and Leah got to meet him for the first time and fed him his breakfast and stuff. So next to my wife and Leah was a family who had a boy with severe autism and he could not show affection at all. And they brought this dog in, his dog, and the dog came right up to him and he sat down and his boy starts petting this dog.

And within 15 minutes he was hugging the dog and laying on the floor with him. And his parents who had gone with him were just so emotional. The whole room was crying watching this happen. And that's the kind of magic that these dogs do. And my wife has followed up with them a little bit.

And it's made him more affectionate. He has a comfort zone now. And he's better socially and stuff. He still has autism, you know, he has severe autism. But this dog fulfills a certain need in there that, that was profound. And the family said it's been life changing for them. Another thing is seizure alert dogs.

Another family they met when they were in a training because Dasher was the only one who was there for hearing Leah was. So the one seizure alert dog, so they're trained to smell pheromones before someone has a seizure, I have no idea how they do it. They had to provide clothes to them of the kid when he had a seizure.

They took the clothes off, they put it in a Ziploc bag, and they'd ship it to the company, to the organization. The first night they brought him home from the hospital, or sorry, they brought him back to the hotel room, the dog all of a sudden grabbed him and pulled him to the ground, and the kid had a seizure.

And the worry always is with that is, they're gonna If the kids are alone, they're going to hurt themselves when they fall. So the dog brings them down slowly and gently as they can. So it's a safer landing. And at the same time, if the kid's by himself He can go and get someone to help with the seizure.

So it was literally the first night he alerted to a seizure, and they were just dumbfounded that this dog could do that. And I know with NF1 and NF2, we have quite a bit of uh, seizure issues. So I think that alone is really a lot of things that can help the NF patient.

Shane: Yeah, that makes a lot of sense. So let's talk a little bit about the different kinds of dogs that can be trained this way. What's the difference between a service dog and another kind of working dog and how are they differentiated? And why is that important?

John Manth: Yeah, so I think it's really important because people just see a dog with a vest on and they don't know what it is. This is, and people are bringing, birds to airports and stuff like that. So we'll start with the service dog. So they're specifically trained to perform a task to mitigate a handler's disability.

So that's why they're covered under the ADA. So it's very specific. It's a visual dog. It's a balance dog. It's a a diabetic dog. You have dogs for severe diabetic children. That's the service dog. And it has to, they have to have a disability and they're helping to mitigate that.

And there's normally state certifications for a therapy dog. They are trained to bring comfort and joy to people like in hospitals in a school. They'll bring them into colleges during final exam week and the students can pet the dogs and relax and stuff. So they help with a lot of stuff. So they're in like a caring environment.

Dasher is also a trained therapy dog, which is not normal. They normally do one or the other. But with Leah being a social worker, she's trained him in that and she's brought him in the hospitals and we brought him into schools and she's worked with him as a social worker and he does amazing stuff.

And then you have emotional support dogs and they provide support and emotional comfort to their handler who has generally a form of mental illness. It normally is anxiety, but it doesn't have to be. And that, and I've I've seen incredible videos of people. who were in an airport and they're about to get on an airplane and they are just having a severe anxiety attack.

And these dogs are amazing. They pick up on it. They come right over. They they love the person. They put their paws on their shoulders so you can hug them. And it is really amazing. But the only one cover under ADA that you can bring pretty much anywhere is the service dog.

Shane: So like the emotional support animals, stuff like that, those are not protected in the same way that a service dog is specifically under the

ADA.

John Manth: That is correct. And the therapy dogs, you generally would have to ask permission to bring them in to wherever you're bringing them in. And a good example is our local children's hospital here. Leah's on a list. And I can bring Dasher in too. And we can sign up and we can go do a three hour shift and take him around to different rooms and stuff like that.

But she's using them more in schools. Because that's where she did a lot of her field training.

Shane: So speaking of kind of the ADA and the law around service dogs, has Leah ever traveled internationally with Dasher? Do you run into issues in other countries? How does The mosaic of rules and other places apply for service animals, at least in your experience?

John Manth: So, we live 15 minutes from the Canadian border, so we've taken him to Canada quite a bit on vacations and trips, and we have found that They pretty much have the same laws in Canada as they do in the United States. So we've had no problems. We were actually just at a restaurant in Canada Saturday night.

I called beforehand just to make sure. I said my daughter is a service dog from the United States and she says, Oh, we totally accept all service dogs. So we, we always ask and we've never been turned away. That's the only country that we've ever been to with him. just because, traveling long distances is really tough with an animal.

They have to sometimes be in the cargo hold and stuff like that. And we would never want to do that. He flies on short flights with her. He's gone to Washington D. C. To do advocacy work. He goes to Boston to all her appointments. And they generally put her in a seat that has like the bulkhead seat.

And he just lays in front of her. He just sits there and flirts with people, to be honest with you, on the airplane. And, we've never had a problem. We get on first normally, and then we'll wait to get him off after people leave, just so we're not a burden. But he's fine.

He adapts every situation.

Shane: I feel like we've covered the topic pretty well. Is there anything you feel like maybe I missed or anything else that you want to specifically highlight, either about Dasher or just service dogs in general?

John Manth: I think one thing, 'cause we just did this presentation, Leah, Linda and I did it at the Boston Symposium. at Boston Children's Hospital. And when we got put on the agenda, I think about 15 people signed up who wanted to get a service dog for their child with NF1 or NF2. And one of the things that we spoke to a lot about afterwards is, we call it the reality check.

So the reality check is that this dog is going to go with you everywhere you go 24/7. forever. Okay. Now, can you leave him home? You can, but that's not the purpose, especially if he's helping you with a disability. I mean, There are days when Leah leaves him home from work and he gets a day off and stuff like that.

And that can be very taxing on the child. And now Leah's an adult now she's 24. So the family does have to take on a little bit more. You have to remember, I got to bring water with me and we're going to be going to a restaurant. And will be there during his dinner time so he can bring dinner.

So all these things that with your normal pet you don't even have to worry about. We literally have like a little diaper bag that we take with him! We call this diaper bag like you would with a toddler that has stuff in there for him. So there is that reality check. And that's why the organization, they required not only the child to come into training, but a parent to come with them.

Because a lot of time that parent is going to take on that responsibility until the child is old enough to do that. So I think there is certainly a reality check and the cost. Vet bills and things of that nature. It's well worth it. We love him and we would pay anything for him.

Shane: Yeah, there's like a there's a big responsibility associated with it that's important to make note of. It's not just, a piece of medical equipment that you're getting or something like that.

John Manth: That's right.

that's

Shane: It's like a living creature and you're signing up for the lifespan of that creature as well, regardless of how long they're a service animal and how long they're helping you with a disability.

Which actually is a point I want to bring up, which is, obviously, As Dasher gets to the point of retirement, have you given any thought to, or has Leah given any thought to, you know, is she going to try to replace Dasher and, Dasher just becomes a pet and then there's another service animal that takes

his place?

Or is she going to try to go forward without him? Or, what's the thought to that? And how does that kind of work from the perspective of once you have a service animal? Thinking about the long term

John Manth: so, We did meet a woman with NF2, several years ago, who had a service dog for a while. And the service dog did pass away at a fairly young age, and she opted not to get another service dog. And it was mainly because she didn't want the heartbreak again, to be honest with you. And, like a visually impaired dog.

That person really has to have them. Leah doesn't have to have him. She could use a walker. She could use a cane. We can put devices into our doorbell where our lights flicker when it, you know what I mean? So there's, there's ways around it. I think it's going to be really dependent on whether she wants another dog or not, and whether she wants it in her mind can really replace Dasher because he literally has become like a best friend and does everything with us.

So yeah, that's a great question. Hopefully we have a few years before we have to cross that, but that'll be Leah's decision and obviously we'll just support her in that. And I think it's all dependent on her needs then and how she feels. I imagine there'd be, have to be like a grieving period first.

Shane: And actually I want to circle back. We probably should have covered this early on, but uh, since you brought up the other assistive kind of technologies and stuff, first off, how did you make the decision to try to move toward a service animal versus just adopting a series of You know, assistive technologies or assistive techniques that you were talking about, you know, we're going to learn sign language.

We're going to do this. How is the decision made? Because it is, a huge expense like you mentioned for most people. So the question becomes for 17 grand, you can buy a lot of special doorbells

and,

And various things like that. Right. And so I wonder, what was the tipping point?

John Manth: I think for her, as a parent standpoint, and she was, younger, she was, I think we started talking about this, she was probably 15 or 16. , A lot of it was us feeling like she would always have somebody with her when her world went silent, she always had somebody with her, because we knew she wanted to go away to college.

She wants to be independent. And to me, that's a lot cooler and a lot more comforting. than just the sign language and everything else. And we've done all of that other stuff besides, because she still has to communicate with people. It was that peace of mind for Linda and I that Leah would have somebody with her all the time.

Because you worry, you're a parent, right? We worry about that all the time. She's going to be treated okay and, especially when she went away to college. She ended up going away just for a year and then came back. It just wasn't for her. But when she was at college, I felt a lot better knowing that she was in her dorm room and could look out for her if she

Shane: yeah, that makes sense. So, You didn't necessarily see it as a replacement for any of those kind of assistive independence fostering things. You still do all that stuff, but Dasher is kind of a way to augment that and in a way to extend yourselves, and provide that safety net.

John Manth: Yeah. That's how Linda and I were looking at it and Leah thought it would just be cool to have a dog. So and we're, we're glad, we're glad we did it. And we would definitely recommend it. And to all the listeners, if you are looking for. Or thinking about this, Shane's welcome to share my contact information.

I've talked to lots of people. It is not for every situation and we can help you work through that and help you with your search for an organization and things of that nature. We're not 100 percent experts, but going through the process once definitely helps us to be able to help other families.

We're more than willing to

do that.

Shane: Yeah, maybe tell people a little bit about how to get in touch with you or, you know, I don't know if you're on any social media stuff or through NF Northeast or any of that stuff if you want to, anything you want to highlight about organizations Or contact for you or any of that stuff, please feel free.

I'm going to give you a little bit of time here to cover any of that stuff you want to.

John Manth: absolutely. Yeah, so my email address is jmanth7028

at AOL. com. I'm certainly on Facebook and Instagram. As far as organizations go, I just, I don't know. Found them to be so comforting. We linked into NF Northeast, which is a very large regional organization. And the first phone call I made was to them once she got diagnosed. And Karen Peluso, who at the time was the founder and executive director of the organization, she answered the phone and we became best friends.

And she quickly got me on. I'm the current chairman of the board of directors for NF Northeast. And we did a lot of fundraising. My family raised close to a million dollars for NF2 research We were incredibly involved in the advocacy efforts, trying to get federal funding for NF2 research.

Neurofibromatosis research and through that I met Kim Bischoff and the NF Network and been working with them for about 15 years now and I'm the current board president for NF Network and very involved in their advocacy efforts. I do all their NF2 outreach work so if you're struggling in the NF2 world, they're going to give you my contact information and we'll set up a phone call.

And I help families with, trying to find, providers, and doctors for specific tumors even, surgical things. And so we just do everything we can in that, venue. And then we have other people, like Shane, he helps with families that need help with NF1. So we try to provide, uh, services for people.

And I think if, You are listening to this and you have a child or yourself has NF. To link yourself to an organization, any organization, is smart. It really is. I think it's smart. It's going to give you, people to talk to, a sounding board, and it's going to allow you to be involved in the community. And there are organizations all over the country.

Last time I counted, there's like 25 NF organizations, probably 30 now. And, I think that, Shane or I could help you with that. Find one close to you. And I think it's a really smart thing to do and get involved. There's power in numbers and we need people to, send emails to their congressmen and we need people to have a spaghetti dinners and raise money and things of that nature.

So the more people we have getting involved, the faster we're going to proceed with helping people with NF.

Shane: Yeah, absolutely. And I'll make sure that if you send me your, social media links or any kind of contact stuff that it's part of your guest profile on the website. So if you're hearing this on your podcast app, or if you're watching it on YouTube if you just click through or go to DecodingNF.com you can go to the show notes page for this episode and right down at the bottom, you'll see John Manth there with his contact info. And you can click him, read his bio, all that kind of stuff. If you want to get connected from there. And with that, I just want to thank you for taking the time to do this interview and it's really appreciated.

John Manth: Well, I just wanted to thank you for having me. It's been a lot of fun. My first podcast, so it was fun doing it. I hope that people found it informative. And like I said, if you need more information, reach out and we'll certainly, help you in any way

we can.

Shane: Great. Thank you so much.

John Manth: You're very welcome.

Shane: Before we wrap up, I just want to thank John, the Manth family, and of course Dasher for taking the time to talk about this subject with me today. And as always, if you have something to say,

you can reach me by email Shane@DecodingNF. com. Everything about this episode and the rest of the episodes of the podcast can all be found at DecodingNF.com. You can subscribe anywhere you listen to podcasts. You can also find us on YouTube, Facebook, and Instagram, and all those links and all that stuff is on the website as well, including all the show notes in this episode with anything specific that we talked about that John wanted to link to.

I hope you found something useful or at least interesting in this episode. And until next time, I'm Shane, and thanks for listening.