EP121: What To Do If You Child Has A Rare Disease

Interview with Will Hoffman / Rare Disease Advocate

HOSTED BY PAUL SULLIVAN

Will Hoffman is a runner and when his son was diagnosed with NF - an incurable genetic condition that causes tumors to grow on nerves throughout the body - he ran towards the problem. With his son, with others, he tried to figure out what he could do and that was to raise money. But he had other children and had to balance that. Learn what he does to make it all work. 

---

Get our free newsletter covering all things fatherhood delivered straight to your inbox: https://thecompanyofdads.com/thedad/

Transcript

00;00;05;14 - 00;00;24;15
Paul Sullivan
Welcome to the Company of Dads podcast, where we explore the sweet, silly, strange and sublime aspects of being a lead dad in a world where men, where they go to parent, aren't always accepted at work, among their friends or the community for what they're doing. I'm your host, Paul Sullivan. Our podcast is just one of the many things we produce each week in the company of dads.

00;00;24;16 - 00;00;46;28
Paul Sullivan
We have various features, including the leader of the week. We have our monthly meetups. We have a resource library for all fathers and for people interested in more. The one stop shop for everything is our newsletter. The dads. So sign up at the company dads.com. Backslash the dad. Today our guest is Will Hoffman, founder of Pittsburgh based Hoffman Wealth Management.

00;00;47;01 - 00;01;11;04
Paul Sullivan
We're not here today to talk about financial planning. We're here to talk about Will's journey as a father of three boys, now 13 at five. His oldest has an F, an incurable genetic condition that causes tumors to grow a nerve throughout the body. He's dedicated himself as a dad to raising money in the hope of finding a cure, improving the lives of people with NF.

00;01;11;06 - 00;01;14;17
Paul Sullivan
Welcome, Will to the Company Dad podcast.

00;01;14;19 - 00;01;17;27
Will Hoffman
Thanks, Paul. Thank you so much for having me and looking forward to the conversation.

00;01;17;29 - 00;01;31;23
Paul Sullivan
So your oldest son, Liam, has nf he's 13 now. You found out, about the condition when he was ten. How did that happen? How did you learn? At Liam had had enough.

00;01;31;25 - 00;01;58;15
Will Hoffman
It was always on our radar. He had, since the time he was a toddler, had, what are called cafe spots, which are just very faint, irregular birthmarks, on his body. And that's really the first indication of NF, and, you know, through the advice for pediatrician, just monitor these. They never really got to a point where they were a concern.

00;01;58;17 - 00;02;20;01
Will Hoffman
And then as he entered, elementary school, had a lot of the, learning challenges that come along with NF. So that's when we started working with our local NF clinic at Children's Hospital in Pittsburgh and received his official diagnosis. In 2021. So he would have been. Yeah. Just ten.

00;02;20;03 - 00;02;23;02
Paul Sullivan
Yeah. How common is enough among children?

00;02;23;04 - 00;02;48;09
Will Hoffman
It's a lot more common than you think. It affects anywhere from 1 in 2000 to 1 in 2500 births every year. It is the most common genetic disorder, that exists. So it's there is a robust community that that is very supportive and helpful and a lot of science being, done on the condition and trying to find treatments and cures.

00;02;48;11 - 00;03;01;14
Paul Sullivan
Yeah. And you said you had some sort of indication, you know, a few years of pediatrician. What was it like in the day when you got that diagnosis?

00;03;01;16 - 00;03;27;23
Will Hoffman
You know, it's never comfortable. It's always kind of a punch in the gut, and you start to think about the past, the future. You know what? What's life going to be like for Liam? You know, fortunately, his doctors all pretty much agree that he should expect to live a long, healthy life just with, you know, some, some challenges that that the rest of us don't, don't experience.

00;03;27;25 - 00;03;55;20
Will Hoffman
But it's it's, you know, especially when you have a ten year old, how you respond is almost just as important as a diagnosis, because now he's watching. He can pay attention. He's he's learning from, how you respond. And that was my wife and I had kind of been very intentional about our response, when it came to to everything and how we've progressed since that day.

00;03;55;22 - 00;04;11;19
Paul Sullivan
You know, as fathers, as, as men, you know, a normal inclination to say, okay, how do we fix this? How do we solve this? What can we do? But as I said, in the interest in incurable disease, what was that initial response for you? Like, I got to do something.

00;04;11;19 - 00;04;35;00
Will Hoffman
What can. Yeah. And that's it's, You hit the nail on the head. It's a feeling of helplessness that we're usually not comfortable with. You know, we're we're to work to. Is the fixer, the the leader, the, problem solver. And, you know, that helpless feeling is not something I'm innately comfortable with regardless, of, you know, being a father man.

00;04;35;00 - 00;05;02;29
Will Hoffman
But, it was okay. I can't solve it. I can't cure it. The next best thing I could do is a make sure Liam is surrounded with the best that we can find when it comes to not only doctors and clinicians, but also people. The folks that are going to accept Liam, champion for Liam, who are going to love Liam for what he is.

00;05;02;29 - 00;05;36;03
Will Hoffman
Show Liam what what, the path forward looks like. And then, you know, for my wife and I, the conversation was okay. Now he's watching. We've done our job. Now. How do we respond and show William that this is his path forward to, you know, changing the world and, you know, raising money, getting involved with the multiple organizations that support the the cause, became our next step because it then it does help you feel less helpless.

00;05;36;06 - 00;05;39;11
Will Hoffman
It makes you do feel like you're having an impact.

00;05;39;14 - 00;05;59;26
Paul Sullivan
When you think about, you know, what you've done specifically that other dads, in a similar situation, maybe with an F, probably not with an F for something else where they have to help a child. What are some of the things that you've done that you think other dads can learn from? And then the flip side of this, you know, we talk about fallibility all the time at the company.

00;05;59;26 - 00;06;09;21
Paul Sullivan
Dad, what are some of the things that perhaps, you, you know, other dads might want to avoid because it's not wasn't ultimately helpful.

00;06;09;23 - 00;06;42;20
Will Hoffman
It was really challenging to avoid a feeling of despair, a feeling of that feeling of helplessness. Again, it is not something that was comfortable to me. But again, letting not letting that feeling echoes through to Liam was was very important because the last thing we want him to do is feel helpless. And to me, that's what was most important.

00;06;42;23 - 00;06;55;07
Will Hoffman
And, you know, fortunately, if it's just the folks I'm surrounded with, I don't know many folks that wouldn't have responded the same way. They would have.

00;06;55;10 - 00;07;17;20
Will Hoffman
Found a way to to help. Found a way to to get their arms around this and do the best that they can to, it'll be an advocate for their son. Be an advocate for the entire community. You know, the big thing we do with Liam now is teaching him to be an advocate for himself. When it comes to the things he deals with.

00;07;17;22 - 00;07;47;07
Will Hoffman
That's that was probably the the biggest thing that that I learned as a path forward was, you know, being sad or or steering into that feeling of helplessness wasn't going to help anything or anybody and trying to find the path forward. And then, you know, trying to use what it is I'm already passionate about is a way to, you know, grow that network of of folks to help, you know, my other passion or I guess, my primary passion, which is which is my family.

00;07;47;10 - 00;08;06;12
Paul Sullivan
You know, often when something happens in a good or bad in our life, there's a lot of focus on that, that moment and something bad or sad. The community rallies around your family rallies around you, but then people go back, right their lives. So they go back to the lives. And this is something that you're in it for the longest of, of long hauls.

00;08;06;19 - 00;08;06;29
Will Hoffman
Right.

00;08;07;02 - 00;08;27;05
Paul Sullivan
Are there any strategy you've employed to sort of, you know, pace yourself for for Liam, pace yourself for you in your life? And a quote from the talk later on about your other two kids so that you know that, I mean, we talked off, you know, in the pre call that that, you know, you run marathons. I mean this is quite literally it's an overused metaphor, but this is quite literally a marathon.

00;08;27;07 - 00;08;27;16
Will Hoffman
Right.

00;08;27;21 - 00;08;37;22
Paul Sullivan
So what are some of those strategies that you've used when, when all those well wishers who have gone back to live in you, you and your wife, your family, you had to really focus on this to keep moving forward?

00;08;37;24 - 00;09;04;06
Will Hoffman
Yeah. You know, and again, maybe it's a credit to the job that, that my parents had done with me. We really have not experienced much in the, the of detractors. Our core group of folks have been with us every step from from our friends, our family. You know, I don't they're not every day.

00;09;04;06 - 00;09;05;17
Paul Sullivan
Yeah. They're not I know, I know.

00;09;05;19 - 00;09;40;20
Will Hoffman
They're they're not in it every day with us. Yeah. But keeping keeping our attitude and our resiliency strong has been important. You know, like you mentioned, I run marathons pacing myself seems to be a common goal every day in addition to running a business. So, yeah, you know, the big thing is, and you mentioned we have two other boys, making sure that their goals and ambitions don't fall behind.

00;09;40;24 - 00;10;01;23
Will Hoffman
It has been important. You know, my middle son plays baseball. My youngest son's just five, but starting to get in. He's actually really interested in golf, which is, exciting for me because now I have a playing partner. So, you know, trying to keep their focus on their things as well, but also realize that, you know, we support each other.

00;10;01;23 - 00;10;18;01
Will Hoffman
William goes to their baseball games, they go to the the races and fundraising events that we do for William. And, you know, building that internal support when it's just the five of us has become, you know, a big, a big, focus of my wife, Jamie and I.

00;10;18;03 - 00;10;39;15
Paul Sullivan
Yeah. Who do you you know, you talked about, you know, marathons, pacing yourself. And if you pace yourself, you you said at the top, you know, I said that you run a wealth management firm. That's all about planning and pacing yourself. You're not saying, you know, okay, guys, put everything in Z stock and let it ride. You're you're trying to plan for, you know, 30, 40 years, you know, down the road.

00;10;39;17 - 00;11;06;21
Paul Sullivan
But when you put that, you know, the formal diagnosis is still only three years old. So when you think about, you know, planning that you're doing and again, with, with an eye toward listeners who may be in a similar situation, what have been some of the key things that you've done, you know, planning wise to sort of keep your your work life going, keep your your married life going, keep supporting your other children, but also really be there for for Liam and and what he needs.

00;11;06;21 - 00;11;10;14
Paul Sullivan
How have you sort of planned all of that? Because, each one of them did a.

00;11;10;14 - 00;11;40;20
Will Hoffman
Lot for sure. And I am, maybe selfishly, but it's never with a selfish intent. I'm very protective of my calendar. I am, you know, for example, yesterday we knew we were spending some family time at the golf course and having dinner afterwards. And, there was an option to reschedule one of my middle son's baseball games, and I said, yeah, we're just gonna have to skip this one because we've got some, some family things that that are important to us.

00;11;40;21 - 00;12;07;28
Will Hoffman
And, you know, we kind of we stay away from Sundays when it comes to those things that that's that's the day for the five of us to be together. That's great. But but very diligent about protecting my calendar so that I either make sure I have time to navigate these things or that my time is blocked, appropriately, is is really been probably my biggest resource for me.

00;12;08;00 - 00;12;20;24
Will Hoffman
It be a little bit of a, of a problem with everybody else, but, you know, trying to keep that calendar disciplined and, and blocked and defended is has been important to me.

00;12;20;27 - 00;12;46;15
Paul Sullivan
Yeah. Yep. And what about, you know, you and your wife and you're trying to do so. You know, I did a different podcast, but it was with a woman who's, a daughter. And I also had three kids whose daughter had, disease. And they really made a point, she and her husband where I think it was like one night a week, she got to go do something, and he got to do, you know, it wasn't like that, but they kind of carved out time.

00;12;46;17 - 00;12;58;26
Paul Sullivan
You know? How have you thought about, you know, you know, your own time, your wife's time, you know, the kids so that you all have, you know, time to do the things that are fun and that the whole focus is just not on this one. One thing.

00;12;58;28 - 00;13;20;19
Will Hoffman
My wife and I are pretty diligent about making sure we schedule trips together. Whether they're, you know, evenings away close to home or, you know, a couple days where we travel. Our parents have been great with, you know, helping with the kids so we can do things like that. So we are most important asset has been our network of babysitters.

00;13;20;19 - 00;13;42;02
Will Hoffman
They said, we can always, usually count on to, to help us out so we can do things like that. And so we can do things with the boys individually as well. For example, when I did the Boston Marathon, we just took Liam with us so that he could experience that trip and we could do some things that, you know, some of the historical things.

00;13;42;02 - 00;14;05;26
Will Hoffman
My then four year old was not going to be that interested in, we take Liam and Miles, my middle son, to to some things without the baby. We we take, babies five now, but we take the youngest one to some things on his own. So trying to make sure they have their own individual interests that are the focus and they get their time with us.

00;14;05;28 - 00;14;28;04
Will Hoffman
As mom and dad on our own is has also been something that has been important. I'm probably more adamant about my wife going to do some things on her own than she is sometimes. I don't know if that's just a mama bear in her that's wants to be with her boys, but, you know, taking time for her to even if it's just take a walk or something is kind of.

00;14;28;06 - 00;14;31;16
Will Hoffman
I try to encourage more than she's willing to take sometimes.

00;14;31;19 - 00;14;55;27
Paul Sullivan
Okay. You know, you're in a business where you're listening to other people tell you their stories and you're trying to help them plan and game out what what their future will look like. And if they have, you know, certain financial, certain family issues, you're going to help them solve it. Right. Turning that around. How have your, you know, have your clients been involved in any of what is their response been to to what you're doing?

00;14;55;27 - 00;14;59;22
Paul Sullivan
Is that help sort of expand your your support?

00;14;59;24 - 00;15;23;05
Will Hoffman
Yeah. And they they've been amazing. We, you know, between my clients and our staff and team, I don't ever feel like I'm missing something or I don't. I'm never made to feel guilty if I have to, you know, go to a doctor's appointment or, you know, just case in point. Liam actually goes to school in our building now.

00;15;23;07 - 00;15;45;19
Will Hoffman
We were having so many challenges with his brick and mortar school that we were really left with no choice but to move Liam into a virtual school environment. I share a building with my father. And it was really immediate. When when with the struggles got too much, we said, okay, we're going to convert part of the office into a classroom, and that's where Liam's going to go to a school.

00;15;45;19 - 00;16;08;10
Will Hoffman
And he might as well be one of our office staff members when he's not in class. So much so that the first day that he, that he was in school virtually, I, I can't remember what I was either on a, on a web meeting or I may have even been I think I was a guest on another podcast that day.

00;16;08;12 - 00;16;32;01
Will Hoffman
And I heard, one of my other advisors, Nico, telling Liam, listen, if you're having trouble with the technology, make sure you can ask me for help to, you know, if you're so they've embraced him. And our situation and really never bat an eye or made. I've never seen any indication that.

00;16;32;04 - 00;16;32;20
Paul Sullivan
Yeah.

00;16;32;23 - 00;16;48;23
Will Hoffman
The demo, you know, we will pop in every once in a while. We have clients in and say hello because they know he's here. So it's it's really been a great community. And, you know, they've been really been accepting of Liam and welcoming of of his presence here.

00;16;48;25 - 00;16;53;05
Paul Sullivan
Yeah. What happened in school that he had to that you had to move to a virtual school?

00;16;53;08 - 00;17;20;05
Will Hoffman
So now is it's a moving target when it comes to learning challenges. Some days it looks like dyslexia. Some days it can look like ADHD. Some days it looks like a combination of both. Some days it looks like he doesn't have anything. So so from a day to day standpoint, sometimes Liam could be doing great in class one day and the next day just really be struggling.

00;17;20;07 - 00;17;57;00
Will Hoffman
And in something as rigid as a public brick and mortar school where they have, you know, 207th graders that they're trying to keep on the same track. Rigidness just was not something that fits into Vnf diagnosis. So, after going through processes of things that that he was entitled to and, and the frustration of them not being offered or not being delivered or, not being delivered consistently, we just finally decided to start exploring cyber schools.

00;17;57;03 - 00;18;25;05
Will Hoffman
And what we have found is the cyber school that he participates in really accomplishes about 80% of his IEP to begin with because of the innate flexibility that it offers. So he if he's struggling, he can just turn a computer off and and take a couple deep breaths and get into the next class. If he needs some individual help on a project or an assignment, they can deliver all of that virtually.

00;18;25;07 - 00;18;53;05
Will Hoffman
And, at his pace and, you know, if he gets tired or exhausted or something, they can stop at a certain point and pick up with him right where he left off. And the rest of the class really isn't a factor. So it was a way to give him a, you know, the quality that he needed, but also at the pace that that is necessary for him.

00;18;53;07 - 00;19;10;26
Paul Sullivan
You know, we're talking about planning. We're talking about, you know, the the now. But of course, Liam is much more than, diagnosis. He's a boy. He's a middle school boy. What are some of the things that that he likes to do? For fun.

00;19;10;29 - 00;19;38;22
Will Hoffman
He is. He's starting to really trend towards things in the art. He has created his own. He's created the logo for his own photography business and is starting to, you know, he loves taking photos on his phone. He does some video stuff for our firm sometimes. So he's really starting to trend in the artistic, avenues.

00;19;38;25 - 00;20;01;05
Will Hoffman
Although he just ran his first 5KA few weeks ago. So he he's, he's enthusiastic about sports. The, whether it's baseball or soccer, football or whatever's happening in the backyard are still very spirited competitions between the three boys. And he doesn't shy away from from any of that. Sometimes he's the antagonist. And, you know, a lot of that as well.

00;20;01;07 - 00;20;17;26
Will Hoffman
So he he's he's starting to to find his own, you know, the way I would explain this to him when when he was old enough to to understand, I was like, listen, not everybody finds themselves at the same time at the right time. Not everybody peaks at the same time. It's just not your time. It will be.

00;20;17;26 - 00;20;27;28
Will Hoffman
And when it is, you know you'll be ready to to capitalize. And he's starting to kind of understand that and steer himself in the direction of, of doing the things he likes to do.

00;20;28;00 - 00;20;49;21
Paul Sullivan
Well, Hoffman, this has been a great conversation. Thank you for joining me on the company of this podcast. One final question for you and that, you know, what advice would you give to other fathers who get, a diagnosis like this, whatever the disease may be? What advice would you give those other dads?

00;20;49;23 - 00;21;18;28
Will Hoffman
It's it's very easy to feel helpless. Be sad. Feel, you know, dejected. Even look internally at, you know, things that you could have done differently. What has seemed to work for us is, is harnessing, the community that surrounds the diagnosis and, you know, making him understand that this is his path to change the world.

00;21;19;01 - 00;21;37;18
Will Hoffman
You know, we all have it in some capacity, whether it's through your business, whether it's through your podcast, whether it's, you know, through your career or through your your role as a as a father or mother. You know, for Liam, it's going to be being an advocate for other folks with, with NF and, you know, having his impact that way.

00;21;37;18 - 00;22;00;09
Will Hoffman
And that was that was tough to understand because we all think we're going to have this, you know, normal life trajectory. And, you know, if you're just listening, using the word normal in Cody fingers, but it's it's his path forward to to have an impact on the world. And I know my wife and I are excited to see what he does with it.

00;22;00;10 - 00;22;10;20
Will Hoffman
I know his brothers are is is is is supportive. And I'm really excited to see what he does with this and really looking forward to how he impacts the rest of the NF community.

00;22;10;23 - 00;22;13;22
Paul Sullivan
Well, Hoffman, thank you again for being my guest today and thanks.

00;22;13;22 - 00;22;15;26
Will Hoffman
So much, Paul.

00;22;15;28 - 00;22;44;18
Paul Sullivan
Thank you for listening to the company, that podcast. I also want to thank the people who make this podcast and everything else that we do with the company of that possible, Helder, Mira, who is our audio producer Lynsey Decker, handles all of our social media. Terry Brennan, who's helping us with the newsletter and audience acquisition, Emily Servin, who is our web maestro, and of course, Evan Roosevelt, who is working side by side with me on many of the things that we do here at The Company of Dads.

00;22;44;19 - 00;22;58;27
Paul Sullivan
It's a great team. And we're we're just trying to bring you the best in fatherhood. Remember, the one stop shop for everything is our newsletter, the dad sign up at the Company of dads.com backslash. The dad. Thank you again for listening.