Thank you for tuning into the HAE Speaks Podcast.

This podcast is brought to you thanks to the support of the US Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver communities.

I would like to send a huge thank you to the HAA as well as CSL, Bearing and Takeda for sponsoring the 2024 Hae Speaks podcast series.

I would also like to thank Michael G for the music that you heard in today's episode.

Hello and welcome to the HAE Speaks podcast.

We are here for this episode with a pretty special guy.

He has done some amazing things throughout his life and then the last year or so.

So we're going to talk all about that with John.

So welcome John.

Can you tell us a little bit about yourself?

Hi, my name's John.

I'm 42, from Albany area of New York.

Got HAEI was diagnosed in 20 O 8 but have had it as far back as I can remember.

And yeah, here here we are.

OK.

Here we are.

Do you?

OK, so you were diagnosed in 2008.

Did you have any family members or what was that diagnosis like?

Yeah, my everyone on my dad's side has it.

But we're not very close.

So none of us have physically or like like whatever.

Relationship wise we're not very close.

So none of us actually knew about any of these stories of what people are going through and but after the years have gone by and talking to everyone, we've all had the similar circumstances with the HA.

OK.

Yeah, that seems to be sometimes pretty common.

I was just wondering if you were one of the first, you know, in your family or if there was that family history so?

It.

Was the first actually to get diagnosed, but the the not the first obviously with any symptoms.

I I think because of my wife, I was the 1st to get diagnosed because she actually pushed me to do all the steps that I needed to take back then to get the correct diagnosis.

Yes, I support all wives, all caregivers in that.

In that instance, yes, I was.

I was that same person in my husband's journey who was like, this is not acceptable anymore.

Like, not acceptable.

We need, we need to, we need to do better for our kids.

Yeah, so I am.

Pat her on the back, Give her a big hug.

She is amazing that way.

So that's awesome.

But John, do you want to tell us about this adventure you went on?

Yeah, I I started planning it last year, probably around this time.

Decided to take a cross country trip across from here in upstate New York, drive to Utah, do some things out there and then eventually make my way back through the Great Lakes.

I did 20 states.

I drove about 7000 miles and along the way it was supposed to be kind of an hae awareness slash fundraising event, which I don't believe.

I got the support from the community that I was hoping to because I think my tactics weren't exactly traditional.

Meaning I made a bunch of magnets with my face and different links to donation pages and HAE information and I put them on vehicles.

People didn't love that finding these things on their vehicles.

So after the first few days, and they were able to access my Instagram and they sent me a lot of messages about them.

So they didn't love that part.

But I did get some people that did appreciate what I was trying to accomplish, and I did get some positive feedback from some people, but most people did not like finding, for whatever reason, a magnet on their car.

Yeah.

To each their own, right?

To each their own.

So let me ask you So did how did this idea come about?

Were you just driving down the road one day and like, hey, I want to just keep going?

I I I I think I I I get ideas and then I dive head first into them and and just focus all my attention on that and I think that's kind of what I did with this for a little while.

It's probably the ADHD in me, but I I I invited all of my family and nobody wanted to go because it was too long in the car.

I ended up camping 95% of it and that idea for especially for my daughter, a 13 year old girl, three weeks of camping wasn't exactly on her bucket list.

So is.

The one that just you in the car.

Yeah, just me, just, I met.

I met my sister and niece in Nashville for a weekend.

But other than that, yeah, it was just me solo deciding things.

But that was the best way because I I didn't have to ask anybody.

Oh, do you want to do this?

Do you want to do that?

I just kind of get all the things that I wanted to do and go to the places that I wanted.

To go to got you got you so right, just like anything else, right you you you tried something, it didn't pan out exactly the way you had expected and that that happens.

But say we wanted to you wanted to do like a take two.

What advice would you suggest?

Or do you think you would take on that take two or where?

What do you take from the challenges you did face?

I think I would avoid the first few days of travel because I didn't realize how large the US is and how large some of the states are and you're just driving and driving and driving and there's really not a lot going on through some of the states.

So I think next time, if there's a next time, I would fly somewhere and all the stuff I want, and then if I want to drive, drive back.

But I didn't take out.

There's a lot of hours in the car and I I didn't take all that into consideration.

I thought it was going to be like things along the way.

I see things that I'll stop there.

And I started researching Route 66 and it it it wasn't what I expected it to be.

There wasn't a whole heck of a lot going on.

So I I would just get to my destination, which was Utah.

That was my ultimate destination destination that hang out in the parks out there and do some of the outdoorsy stuff.

So I think avoid the first few days of travel and just fly wherever I'm trying to go.

A lot of flat land between you and Utah, yes.

Yes, yeah, Texas would, Texas would.

There wasn't a lot going on in Texas.

I did go up the northern part, so I'm sure I missed a lot of the beautiful stuff, but just that the route that I took was not the most scenic I guess.

OK, got you, got you.

But I applaud you for going and and doing it and and and.

Things.

Having that dream and like, I'm just going to do it, let's see, let's see how this turns out right.

Oh, part of the hae thing too was I reached out to this I I probably annoyed a lot of people.

I I reached out to literally hundreds and hundreds of Fortune 500 CE OS VPS.

Just various people throughout the companies asked and I wrote this whole thing about what I was trying to do and their awareness and the donation all that and requested donations or anything from various companies so that I can either give it away or whatever and then donate the proceeds to the HADA.

Which I was able.

I I was able to raffle off of vacation anywhere in the US and then donate that Lowe's proceeds to the HAUVA.

So you know that too.

I I forgot about that.

That was a lot of work.

I I was able to actually reach, surprisingly, a lot of these people personally, and they would either reject, like politely reject, or some of them actually donated on their own.

Or at least they told me they were going to.

Yeah, not sure if they actually did, but the support was pretty good on that too.

That's awesome.

That's awesome.

And right.

Like you don't know until you ask, right?

In the worst cases, they say, not right now or I I.

I'll never see these people in my life, so it doesn't matter.

Right, right.

And I I applaud you for, for doing this and having this insight.

So what's next?

What's next for John?

Oh gosh, I don't know.

My my daughter's getting older and her bucket list is growing.

I've never really had one, but hers is quite extensive.

So I think I'm we're going to let her decide the next few trips.

Obviously Panama, we're looking forward to for the year the conference which would be awesome.

OK, I will see you there.

I would like to see you there in person.

Yes.

I'm in attendance.

And I I I'm thinking maybe Greece or Italy in 2025 probably this is a new thing.

I there's more to to this than the HA.

I I lost almost a person like 160 lbs.

So now I'm able to like go and enjoy all these things.

So travel.

That's awesome now.

And if if Katie, my daughter, wants a bucket list to to figure out where we're going, then cool, we'll we'll just travel off of that bucket list.

Does your daughter have Aje?

She.

Does, yeah, she.

Does.

OK, I like that you are teaching her to not let that hamper her, right?

Let not let that keep her in home behind closed doors.

So that's.

Awesome, John.

If you let me backtrack one moment, we I got so excited when you mentioned Panama, but can you tell our listeners what we're talking about, where we're going to meet in Panama can?

You.

Talk a little bit about that.

The HAEA believe it's the international group is putting on the the conference for the Americas in this year.

I know it's a little different this year.

I know it's usually been one place for the International and it sounds like they're doing geographically some different ones and this is this one's for the Americas and Panama City, you know during the Ides of March.

And actually, it's it'll be my three-year anniversary from my gastric bypass surgery.

OK, OK.

That's.

What a beautiful place to.

Celebrate.

The reason to celebrate?

Yes.

So you had it exactly right.

The HAEI puts on, typically every other year, an international conference where everybody on the globe comes into one central location.

And this year they're doing it a little bit different.

They've segregated it up until into regions and so John is right, the one in in March 2024 will be held in Panama City, Panama.

So I look forward to meeting anybody that is going to be in attendance for that.

That should be very exciting.

We always.

Love doing any of the HABA events because I mean we've we've known you guys for what's it been probably 15 years now, maybe 1215 years probably.

And just the information that we've received over the years like we've gotten a lot from you guys as has probably everyone else that's listening.

But the most beneficial thing that we have received has been information, because it's such a little known disease that when we finally discovered the HAEA it was just like weight was lifted off of our shoulders and there's finding a place that has all this information that we've been looking for.

It was like pre Internet really like not really.

There wasn't a lot on the Internet.

So it it it was, it's been great to have an organization that is in the know always.

Yes, yes it is.

And and it is a real community and a real family.

I am a caregiver, but I've been a caregiver now going on like 25 years.

And so I have been to many, many conferences and attended webinars and on all that kind of stuff, and every single time I'm still learning something new.

There is a lot that you you talk to over the phone or e-mail with or Facebook message like.

I mean we pretty much know all of the like old school HADA people.

So I love going to the events just to be able to catch up with those guys in in ladies obviously.

So yeah, the the events are great and seeing everyone.

I can't wait for Panama.

I can't either.

I can't either.

And I was glad in this year when we had our, our summit here for, you know, the United States and just to like be able to see people.

And then give.

Them a hug.

It had been too long.

Right, right, right.

The whole COVID thing and everyone was secluded it.

Yeah, I think it was a nice, like, welcome back type of thing for the HAEA community.

Yeah, it was really awesome.

So yes, everyone knows the beautiful weather so.

Yes, it was.

It was most definitely.

So, John, I ask everybody at the end of the podcast like what?

What advice would you give other people newly diagnosed or just starting to start have attacks?

What advice would you give?

You need to advocate either for yourself or find somebody to do the advocating for you.

Because even though we with the disease are not the medical experts, we typically have more knowledge than the professionals.

And at least that was the case for me when I was first diagnosed and all that.

They were literally Googling it, and luckily I had my wife there to explain my sister's APA and she kind of thought that's what was going on throughout the years.

So that's kind of how our ball started rolling towards the diagnosis was just kind of this hunch that she had it.

So yeah, it's just you need to advocate either for yourself or for your children or for your loved one or I'm not very good at it.

For me personally.

I I'm, I can advocate for my daughter because she faces all the same stuff that we all do.

But you need to make sure you're good too in order to be able to take care of somebody else.

So you need, you need to make sure that you're getting the care that you need, do it effectively.

And I mean, there's ways to go about it and I'm sure if I I hate to put more work on other people, but I'm sure if anyone has any questions about it, just reach right out to the H AEA and they can help you out they.

Can they can.

And if John wants to do a take two, you know the H AE can help you do all these DIY events and in any way they can help you.

They're they're there to help you, so.

And if anyone wants to bug the presidents of all these companies, I think I still have that list somewhere.

You still have that list.

That's awesome.

That's awesome.

So yes.

So thank you, John, for coming on the podcast here with us today and sharing your experiences.

And we can't wait to hear what's up next with you.

Thank you.

Thank you.

I appreciate.

Everything.

You guys, Yeah.

No problem.

And thank you everyone for listening and have a wonderful day.

The.

Information presented, including opinions and recommendations, is for educational purposes only.

It is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

No one should act upon any information presented without first seeking medical advice from a qualified, licensed medical doctor.

For assistance finding a physician, please contact an HAE Advocate at 866 798-5598.

The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote disease education and awareness.

We provide personalized services to address the unique needs of people with HAE and their families, which include helping them secure access to and reimbursement for modern HAE medicines.

Our great success in supporting clinical research has resulted in a variety of FDA approved therapeutic options.

We work closely with expert physicians to continuously upgrade quality of life through improving diagnosis and knowledge of the disease and encouraging A tailored patient focused use of available therapeutic options.

The HAEA is product in company neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.