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Wes is the Founder and CEO of Rare Patient Voice. A market research industry veteran of over 40 years, Wes earned his MBA from the University of Chicago Booth School of Business and a BA in English from the University of Pennsylvania.

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In 2013, Wes launched Rare Patient Voice based on a novel approach to building a market research panel, one that enables patients and caregivers to share their voices with the researchers and companies developing products to improve patients’ lives.

He structured the company on the core values of being a good resource for patients, a good partner to clients, a good employer to staff, and a good citizen in our community.

Since then, Wes has seen the company grow, expanding from the US to Canada, the United Kingdom, Spain, Italy, France, and Germany, completing thousands of projects, and providing customized service to hundreds of clients. He hopes that RPV’s work can help the lives of patients and caregivers who are able to participate in our studies, and of those who come after.

• Hobbies: Walking his dogs, piano, history, exercise
• Pets: Ace (mix of Beagle and Brittany) and Stanley the Chocolate Lab
• Likes: Hearing from patients who have enjoyed taking part in a study
• Dislikes: When no one qualifies for a study
• Fun Facts: Wes spent a year in Edinburgh, Scotland and ran cross country with the Hare & Hounds

You can also check out the Rare Patient Voice YouTube channel to hear the stories of individuals who are a part of Rare Patient Voice.

Hey, Wes, thanks for joining me on the podcast today.

I'm super excited you're here.

Hey, Shelly, great to be with you today.

Yeah, as we were talking before we got started, I stumbled across Rare Patient Voice, just doing

some research for my podcast and then for Steve's transverse myelitis.

And so I would love to know, for you to tell our audience a little bit about yourself and why

you started Rare Patient Voice and what it's all about. Sure, Shelly.

So I'm a dad and a granddad and a husband and a dog owner.

And so you can see I'm busy doing fun stuff all the time.

And I'm fortunate now actually to work out of my home.

So all those things I'm much more able to do than years ago.

But years ago is what started Rare Patient Voice.

I was in a market research, surveys and interviews, asking people their opinions.

I always found it fascinating to find out why people do what they did and how they express themselves.

And I had done that for things like Cheerios and Wheaties and McCormick Spices and things like that.

Then I got into the healthcare field.

I knew nothing about healthcare, but it was fascinating to learn about it and one condition

or one disease at a time to learn from physicians and from patients, how they approach it, what they need and such.

And what got me started in this was simply a client came to us, a company that was big in the hematopoietic space.

Now hematopoietic is very rare.

And it was even rarer 20 years ago because the whole generation, unfortunately, had been wiped out.

They didn't understand age and HIV and that got into the blood supply that was being used as a treatment factor.

But any event, a client came to us and said, hey, we really wanna understand these folks, their families, the patients.

Can you create a panel?

A market researcher called a panel.

It's a group of folks.

And in fact, it's a database, but people that we can go to and ask questions and really learn a lot from them.

We really wanna know what's on their minds.

And so we went to the National Hemophilia Foundation and set up our table and signed people.

It wasn't even online, it was clipboards and giveaways.

And it worked really well. People were very interested.

They loved to share their opinions.

And they signed up and we did a lot of surveys and a lot of interviews and the client was happy.

And every year we went back to the hemophilia conference and two or three years later, a different

company came up and said, hey, Wes, I hear you have this hemophilia patient panel. Can we access it?

Well, no, if company A buys something, you can't give it to company B.

So I'm like, well, no.

But that gave me the idea.

It's like, why not create something that's not just for any one company that could work for

a lot of different companies and for that matter, different diseases.

But I had that idea in my head many years, didn't do anything about it.

You know, I had to be, I think a lot of times you have to be forced to do things.

And so it was time for me to go out on my own.

My wife had been looking for a job and she found one with healthcare.

It was all about the healthcare, right?

And this is 11 years ago now.

So it was over 10 years later after the idea started.

And guess what I did? I started with hemophilia.

I went to the hemophilia conference and it worked out because right before I went, somebody

called and said, hey, we've been trying to find hemophilia patients.

You don't happen to have any, do you?

And I said, by the end of the weekend, I will.

So we went out there.

It was in Anaheim that year at Disneyland.

A wonderful conference and recruited folks.

And from then, so then it was just me and just a few people with hemophilia.

Now it's, we have 40 some folks.

We've done 1,500 or 1,500 different diseases and conditions and we pay patients.

We pay them for taking part.

We figure their time is valuable and they get paid $120 per hour at a time.

So we paid out over $13 million.

So for me going to that one show, now we've got wonderful people that handle all this and do all this.

And so many people that have found us like you have and signed up and get invited from time

to time to share their opinions.

What are these folks that come to you, what are they looking for in terms of what are they asking

patients and what are they trying to get for their own research?

Yeah, excellent question because, and it varies so much.

Typically it's starting with a biotech or pharma company who wants to learn about the disease, about the patients.

They don't come to us directly.

So they'll go to a research firm that designs questionnaires, that has moderators, that figures all that stuff out.

And so, and then those folks come to us and say, hey, we have this study.

We need a hundred people with hemophilia or 10 people with gauche or five people with transverse

myelitis, whatever it might be. They'll come to us.

And typically it's when there's a new product, a new treatment in development.

I like to tell patients, this is good news.

Nobody's doing this for fun.

They're doing it because they need to.

And that means they're working on something.

I don't know how good it's going to be, but at least they're working on it.

And so a lot of times they'll have a description of the new treatment and they'll never say what it is.

You know, it's product X or something, but they'll describe it and they want to get the feedback.

Well, what do you think about it?

Would you ask your doctor? What do you understand? What don't you understand?

Because they need to, you know, nowadays they know it's not just about going to physicians.

That's a very important, of course, but it's about patients.

Patients, you know, they see things, they go out to them on the internet, that patients ask their physicians about stuff.

So they want to make sure they're communicating that.

So that's probably the most important thing.

I tell people, it's kind of like a sneak preview, right?

Of products that'll be coming out in a year or two.

You're seeing a description about it.

And so that's a key thing, but there's also a lot of other ones.

There are, sometimes they'll have a website, right?

And they want to see, can you work, is it intuitive?

Can you figure things out?

They might have, sometimes they'll want to visit people in their home because it's one thing to talk to people.

It's another thing to kind of see how it's impacting their lives.

It's like, oh, it's not just their kid.

They have other kids that don't have a condition and they have to take care of that.

You know, they see the full life.

So it's really a wide variety, surveys, interviews.

And then sometimes it gets down to pure marketing.

Is our, should we go with a purple box or the blue box? You know? Yeah, yeah.

But they want, it's better that they get opinions, right?

Than to pull it out of the air or ask their friends.

So they're marketing MBAs in some tower.

That's not the general population with the condition.

So it's always good to find out what people think and feel and then incorporate that rather than pretend you know.

I like how they, you know, some of them, excuse me, do the qualitative approach as well, because

you don't, you know, one of the things that Steve talks about a lot with his condition is that

you don't know what it's like to be in this body.

I mean, we can sort of, you know, I can sort of understand maybe what a woman with breast cancer

or, you know, some really rare chronic condition might be feeling, but to actually go in and

see this person interacting, moving around, you know, doing the things that they can or can't do.

I love that approach because you can say anything on a quantitative survey, right? Right, right.

You're clicking a box and a lot of times you'll see it.

It's like, none of these are exactly what I want to say, but I don't have any choice.

And you just like, you want to get your voice out there and tell people.

And the other thing is, you know, so many people were kind of conditioned. How are you? Fine.

Well, that's not a, especially if you're suffering from a condition, that's not a helpful answer.

So it's nice to get deeper into it and then say, well, you mentioned this or see, or I noticed

that you're, and then people, you know, we'll see people at a con, we'll go to the, there's

this wonderful series of conferences called the Abilities Expo.

It's folks with various disabilities.

And so somebody will come up and we'll say, oh, well, you know, would you like to sign up? Sure.

And we'll say, well, do you have any, do you use any devices or things?

And they'll say, no, no, I'm fine.

I'm like, well, we noticed you're in a wheelchair.

I mean, that's important to us because we do studies for, so, or I noticed you're having, because

fortunately people adapt to anything, right?

But it's like, we, they forget to mention these things and these things are very important.

How can we help people?

We don't really know what they're going through. Yeah. Yeah. Yeah.

I don't use the device, but I'm sitting in a wheelchair.

I think it just becomes such a part of who you are that the extension that you don't even really

think about this thing that you're sitting in. Yeah, exactly.

And you want to be, and I appreciate that people are kind of positive about these things. No, everything's fine.

It's like, okay, let's dig a little deeper. Yeah.

Well, you know, we say fine a lot.

I'm really trying to stop saying that, but it's about, you know, being in the context of where

you are now and maybe you are just fine where before, you know, this wouldn't have been such

a fun thing to do.

Oh, a sec, make sure Steve's not texting me.

He's in the other room, but I have my phone in case he needs me, which he won't, but you know.

Oh, well, that's an important thing that we have to communicate with clients.

If they're used to doing interviews about Cheerios, they'll be like, well, why did this person not show up?

We're like, you're talking to patients with conditions or moms of kids.

Things will crop up and we have to be simple.

You know, that's more important than our interview today.

I know you don't want to think that, but their lives may get in the way of some of this and

people have to be receptive to that.

Yeah, anytime I go out, I have my phone on the table.

I'm like, I'm so sorry, but you know, I can leave Steve for a couple hours at a time.

I'm like, I have to have my phone on the table.

So yeah, so the process is a researcher, a medical company, somebody will come to you and say,

I need so many patients.

And then you recruit those patients from your database. Correct.

We send out an email because one, who answers their phone these days, right?

You get all this junk.

And so we don't want to be obtrusive, but we alert people.

You're going to get an email, you know, if it's from us.

Cause I, you know, I see a million emails on my personal one, like normal, but people are alert.

So we'll send them that.

And then we even give people the opportunity, if they say they want to do surveys from time

to time, but they see one and they're not interested in it.

We let them click a box that says, don't remind me about this one, but don't, don't kick me

out because I know it can get, people can get annoyed, you know, cause we'll send two or three reminders out.

And I was like, I don't want to, I already said it.

So we'll let people, our kind of a mantra is we don't want people to hate us.

We'd rather have them like us.

So what can we do to make people happy? Yeah. Yeah.

So I'm just curious, what is the most sought after condition for research that you've seen,

like say in the past six months or so? Wow. Yeah. It's funny. It's, it's so variable.

I mean, depending on how you define things, if you combine cancers that, and it's because there's

so many and there's so much, fortunately, there's so much wonderful work that's being done in that area.

You combine that, cancer is a high one, but it's, I mean, just off the top of my head, we all,

we still have, hemophilia is very active category.

You know, which one I've seen a lot lately is myasthenia gravis, but we'll see things like multiple myeloma. We'll see ulcerative colitis.

We'll see psoriasis, but it's, I can't even, you know, it's, it's whatever we see. I was just curious. Yeah.

It's, it's, it's just, it's just amazing.

And then we, we, we started with rare, but now we also accept non-rare because we found one,

people generally don't just have one condition.

Unfortunately, if you get one thing you have, and they say, well, should I also put my anxiety or my asthma in?

And then clients started to be quite, okay, we, so we didn't want to change our name, rare patient

voice, but we wanted to be open.

So we added a tagline. It says also non-rare.

Well, that's kind of everything, isn't it?

But we focus on the harder to find, and everybody's, I like to think everybody is rare in their own way. Yeah. Yeah.

Because everybody is unique, so.

Well, I, I appreciate the, the rare part of it because with transverse myelitis, there's only

like 1300 cases a year, super rare.

And there's just no, and I get it.

I mean, you know, if you, if you have, you know, 1300 people a year getting this, is it worth

the research money into something like that, as opposed to something bigger?

You know, my son has, what is my son, Crohn's disease. Yeah. Okay.

So I know that that's a bigger issue.

So do we want the money to go there?

I mean, I totally get that.

It's a little frustrating for me that we can't find answers to this, but you're so right that

even if, you know, you, you start off with something and you didn't have any other issues in

your life and you get to like, you know, you say you get transverse myelitis, you know, I'm

noticing some anxiety in Steve, some depression, you know, just other things that go along with that.

Because every day it's like, oh my gosh, what is this now?

What do we do about this now?

So I appreciate, you know, all that to say is I appreciate you lending a hand to people with,

with rare, with rare chronic conditions.

One of the fortunate things that's been happening in the world of rare conditions is I think

companies have discovered if they focus on a rare condition, whatever treatment they have often

works with a lot of other conditions.

And that's, and if you're thinking of economics, they can, they can go to a rare condition.

It's a smaller clinical trial. There's, there's, there's perks.

The government is to encourage folks to work on rare diseases.

And so they can do that.

Then they have a drug that's worked, that's proven in the marketplace.

Then they can get other indications.

So they often start small and broaden it.

I mean, so that, that's the good news.

A lot of times where they, they will work on something small because they see more than just

those 1400 people every year. Yeah.

So I noticed also on your website, you have, oh, I blanked on what you call them, but you have people, stories from people. Uh-huh. Uh-huh.

Like you'll highlight an individual. I'm sorry, I can't.

Yeah, don't blame me, I guess.

Some of them we call the warrior.

I'm as bad as you are.

But anyway, we have a lot of videos that they do.

Well, we'll, we'll figure it out and talk about it down in the show notes when the time comes.

But so how important, how important is that patients get their story out like that?

What, what does that do for, for someone with them? Yeah, it's funny.

It's like when we talk to people, like why, why do you sign up with us?

Why do you, why do you work with us?

The first thing people say, isn't it really about the money?

Cause we, you know, we, we like to be generous and pay, but that never comes up first.

It's really, if I can just help, it might help me, but if it doesn't, even it helps those coming

after me with this disease.

Cause people are like, I mean, it's one thing to be passionate about your Wheaties or your Cheerios or something.

And people like, but you know, if it's you or your kid with the disease, the spouse, you know,

it's what, what could be more important than them and their health.

So people want to get the word out.

So much of it is about awareness, especially with a rare disease, because you know how those

people go and they say, what is that?

And you look fine to me.

And, and, and, and people, it's one of the most frustrating things for the patients and the

caregivers is when people don't really understand anything about it. And how can they?

I mean, there's rare and they haven't heard.

I mean, but they, they love to get the word out and tell people, I mean, look, look, look, years

ago, Jerry Lewis did the telethon, right? Oh, I remember those. Yeah.

And it's that raised awareness, but that was just for one, one condition.

So there's so many things, but to get the word out, people are so, you know, like I'm sure you

were in the same situation.

You probably hadn't heard of transverse myelitis before.

And now you're like, you know, what can we do to raise awareness?

And just because you want to not only raise awareness, you want to get people focused and let's

see if we can get a researcher on this and, and who can do what to help.

So that's the, that's the key.

People love to get their stories out.

I like to say, your family's probably tired of hearing about you, but we want to hear from you.

That's why I did the podcast.

Cause I think people are just like, ah, I got to hear from Shelly one more time.

I can tell complete strangers, you know?

So, so what personally, what insights have you personally gleaned from, or, you know, words

of wisdom from the, the patients or the people with these conditions that you speak to?

I mean, the, the, the one thing that, that always amazes me is, you know, cause we go to a lot

of these, these patient events, walks and conferences and things.

And it's great to meet folks in person.

And, and every condition or disease is worse than the one before, you know, they're all so many

in so many different ways.

And I'm always amazed here, these people here, they're not curled up in a ball. They're out. What can I do? What are you doing? Who's, who's doing what?

And then I'm remembering, I'm not seeing them on the day they were diagnosed.

I get, I bet you that was tough, right?

And not just the day, but I'm seeing them.

And I'm not seeing everybody.

I'm seeing the people that have, you know, said, what can I do about this?

But still, I'm so amazed at the spirit and the motivation and the inspiration that the folks have, they'll, they'll come.

And then we'll see, you know, people will come to these events and I will talk to them and I'll

say, can you sign up and say, well, actually, my loved one passed away.

So they're still there because they believe in the cause so much and they've lost their loved ones.

So that spirit that people have, it's just, it's just amazing.

That's, that's, and that's across everything, you know, that transcends diseases and conditions and everything.

Yeah, no, I, and I think that's a great point because one of the things that I talk about all

the time is that, you know, these are your moments now, you know, our life changed collectively,

my life changed, his life changed.

And so we can either wallow in what was and what will never be again, or we can move forward

in our, in our lives and make the best of this situation that we have.

Now, I'm not saying that's easy. No, right. Really, really hard.

But I love that there's a place like yours that people can go to and let others know, you know,

what, what they're, what they're feeling and what's really going on in their lives.

So where, where do you, how long has RPV been in existence?

How long has it been? 11 years now. Oh, wow. Okay.

And so you just like one day woke up and thought, oh, you, you told a story where people, you had somebody, you thought.

I woke up and said, today's the day.

Let's, let's do a database for people.

So where do you see, where is RPV going forward in the next two or three years?

What, what's your, what's your game plan?

Well, so one of the things that we started a couple of years ago and we're, we're working on a lot more expanding.

We started, we were in the US for years and years, cause you know, I speak English and we're

in the US and it's kind of easy to do things, but now we're in Europe and we're expanding there

because clients come to us and say, we really, we love the patients in the US, but we can't

find them easily in Europe.

So we've expanded into Europe and some other countries.

People come to us for every country in the world.

I say, I'd love to, one step at a time.

I love, I love to be everywhere.

So geographically, the other thing is interesting.

Again, we've done these surveys and interviews because that's my background, but there's a whole

nother industry, if you will, related that needs patients.

Clinical trials, every disease treatment and all, and they struggle to find patients.

So now we're, we're working in that area to say, hey, we can help find patients.

And I look at it as, hey, we're giving patients an opportunity.

There's a lot between learning about it and actually enrolling, cause do you qualify and talk

to your physician and figure out all the, all the things, but we can provide those opportunities

to people and from time to time they'll work and they, they may save a life there or they may

bring forth a treatment that helps, helps so many people.

So that's a big area now that we're, that we're, we're working to get the word out that we will

recruit for clinical trials as well.

So for people who don't understand like surveys and questionnaires and these, you know, clinical

trials, what level of confidentiality you have with these, like how much does the person doing

the interview actually know about the person giving the interview? Right. Yeah, that's key.

So yeah, so from our side, we have all these things where they call ISO certified.

Cause we have to be very, very, this is health data, right?

That's, that's the most private of data.

So we have to be very, very careful, but the system we have really works out well.

Everybody gets this long alphanumeric code. That's their ID.

And we know who people are because when they're done a study, we send them a check to their name and address.

Our clients don't, they have that long alphanumeric code.

So they see the answers they give to a survey, but they don't know that it's Shelly that said it.

And we don't see the answers, but we know Shelly did it and she gets 120 bucks.

So it's kind of, it's like the nuclear thing.

And you don't want any one person to be able to push both buttons, you know, it's separated

and it's worked out, worked out very well.

And I have to say our clients and the pharma companies, they're almost paranoid.

They know they're bending over backwards, not to break the confidentiality rules. So we appreciate that.

So, you know, we, we, we, we take it very seriously and everybody else does too, because nobody,

nobody else has any business knowing your health data. Yeah.

Well, I think for some people it's super, super important.

And I know there's aspects of Steve's stuff he's got going on that he doesn't really, we don't

talk about with other people, you know, so that's, that's a good thing to have.

So let's say someone wants to sign up for your website and for, you know, possibly doing a study or a questionnaire.

How do, how do we go about doing that?

Oh, we try to make that easy, right? That's a thing. So I did it. It was super easy. It was super easy.

And even if there's a problem, we have people that will help answer any questions. A rare patient voice.com.

So it's a long three word comment there.

And then anywhere on there, you'll see buttons that say, sign up here and you click on that.

And then they add you what country you're in and, and then condition and you, and you put your information in.

And if you have more than one condition, it kind of lets you put, put them in, or if you're

a patient and a care, it gets more complicated than you think.

Cause you could be a patient with disease X, you could be taking care of three people.

One has disease A, B, you know, and, but we, we, we allow all the, any and all combinations of that.

But anyway, rare patient voice.com.

And then we have phone numbers and emails.

I'm always happy to, it's great when people ask questions because it means they're thinking

about things and they want to know why.

So we're always happy when people have a question about it or have some issue or, and sometimes

we get so many people signing up.

We can't, it takes us a few weeks because we actually go through each one, one by one.

We don't want to believe it or not market research.

I go to these market research conferences.

Fraud is a terrible problem.

Oh, tell me it's not.

So I don't mean, especially think about an online survey in a third world country, even if they're

getting a couple points, it's money, it adds up to them.

And I don't blame them.

They're, you know, they're put in a position to do this.

But so we, we, we love a, that we've met so many people in person, or we work with referral

partners or advocates, advocacy groups, individuals.

And we find people that we meet because who's going to a conference on hemophilia for, you know, no, they're real.

They're going out of their way to go somewhere.

And people that they referred are real, but people that sign up online, obviously anybody could do that.

So we, we check and look, Hey, what are they saying?

Does the treatment make sense?

And the, the, the old, most old fashioned way in the book, talk to people, call them up because,

you know, in two minutes, you know, if somebody, Oh, I got to do it after Smith.

If we do this, okay, you're, you're for real.

So it's, it's it's, it's very important, but yeah, so they just, they can go in, sign up and,

but, and then again, but it can take us a few weeks sometimes to get through the backlog. So I hate that.

I like, I like people to be signed up and get invited right away, but.

Yeah, well, I, I, for one, appreciate the thoroughness of that, checking out, making sure that we're real people.

So Steve signed up with his transverse myelitis as a patient.

I signed up because I, well, I have a little bit of anxiety, but I don't have like any conditions.

So do you, but you can sign up as a caregiver. Exactly. That's what I did.

So that my question is what, what can, as a caregiver, what can I expect to hear from, from where a patient voice? Yeah.

So a lot of, as you can imagine, a lot of studies are more about the caregiver than the patient,

depending on the, like, like there's like, well, like if it's childhood disease, certainly we're

just, we're talking to the parents.

Generally, not, not the, certainly not a child.

And if it's a debilitating condition, if somebody has ALS and it's down the line or anything

like that, but there's often ones where the one patients and caregivers say you have MS and

you're, it's, you know, you're doing, you're doing okay.

They want to find out from both sides because the patient might say, no, that's fine.

And the caregiver might say, it would really be good if she could, you know, it's nice to get to that perspective.

So sometimes it's, it's exactly, they want to know the patient's point of view, but they can't get to the patient.

Sometimes they want the caregiver's point of view, even when they can get to the patient.

So, so it varies, but it's, it's so important to, to, to, you know, to include the caregivers,

especially with some of these conditions, because otherwise they would be hearing nothing.

Yeah, because one of the things I'm finding as I go down my rabbit holes is that there's a lot

of information for caregivers who are caring for, let's say parents of Alzheimer's, you know, spouses.

I just had a friend on who's spouse has Alzheimer's, but when you look at, you know, caregiving

for chronic conditions that are rare, they're chronic, but they're not terminal.

You know what I'm saying?

It's like, like this long drawn out process that we're going to be going through.

There's really not a lot of, of good information out.

So I would love to see, you know, more resources for, for caregivers of, like I said, rare chronic

conditions that aren't, like Steve's, it's not curable, but it's not terminal. Yeah, yeah, yeah.

We, we, we did a survey that we presented at a conference ourselves.

So sometimes, sometimes we do our own.

So we do see answers and we can, and we did one about caregivers and about what are all the

tasks they perform and each, you know, and everybody had eight plus, and each one of those is multiple. One's transportation help.

Well, there's a million things in that and the medic and everything they do and then how it's

impacted people, you know, and, and, and some of the things people don't want to think about,

but financially, a mom had may have given up quite a career because she's 24, seven, a caregiver

and, and emotionally, and the whole family situation, they get tired of family members think

they're being, it's like, no, we can't go today because, and then the other, but all the issues that people run into.

And I, it was eyeopening just it's because, and, and we, what, what could we do? What could we do?

And they said, if I could just get a little time, if I could have the person in the care of

somebody that's respond, you know, can actually do it because, you know, 24, seven, as you say,

and it's on, it's, it's, it's, I mean, the good news is there's no end in sight, but the bad

news is that's, that's the body can only take so much, right? Well, yeah.

And, you know, and I know it's like a, maybe a, a subject people want, don't want to talk to

when I say things like Steve's condition is not curable, but it's not terminal.

I mean, it, it's, I'm not, I'm not trying to be morbid.

It's just the reality of, you know not that I ever want anyone to, you know, to, to pass away from it. But it's the reality.

And I'm big on like, you know, speaking truth to things. Right. And it's like, okay.

And then the thing, what am I going to do in 20 years?

Or, you know, you're, you're, say you're an old parent of a child with a long-term condition,

but that's fine when you're 20 and they're you're 40 and they're 20.

But what about when you're 80 and they're 60, you know what I mean? Yeah.

So those are really some of the things that I'd like to bring to light with, with my topics

and things, but I do appreciate, I really, I just was on your site for a long time.

I went through your videos.

I just really love what you guys are doing over there.

I was just so impressed with everything.

And that's what I'm like, I'm going to email Wes and see if he'll be on my podcast. That's terrific.

No, because you put stuff out and you never know who's seeing what or what's, what's getting

out there and what's having an impact. Yeah.

So before we wrap up, what would, is there something you would like to tell from your vast experience

that you've been doing this and talking to patients and caregivers and doing the work that you're doing?

What would you like to say to patients with rare chronic conditions and the caregivers?

I think it's, it's, you know, share your voice. Don't be afraid.

Don't be, you know, we hear so many, especially with rare conditions, they, people certainly

learn more than their family physician.

Because, you know, if the guy, she or he only sees one, they're not going to know.

So, so they, they have to, you know, not be afraid to raise their voice, to say, to make, make some waves.

Those are the people I meet at these things.

And, and yeah, it's not always easy to do that.

You know, we're taught, we're not taught to behave that way, but I think it needs to be done

because otherwise some of these things will never, you know, never see any progress.

Just getting the, you know, we hear from folks that have, again, MS and they need a wheelchair

and they're like, but I can't afford this.

And it's not covered by that.

And one of our guys says, Hey, they don't know there's an organization here that helps people find wheelchairs.

You know, there's things out there.

You just have to ask and talk and spread and see what you can find. Yeah. Yeah. Well, I love that.

I think that is a great way to end this conversation.

So thank you so much, Wes. Well, thanks Shelly. I enjoyed it.

And thanks so much for, for doing this. Yeah. Thank you.