Hello, I'm Catherine Anaya.

Welcome to Horizonte.

ALS, also known as Lou Gehrig's disease, is a devastating diagnosis that affects not only those living with it, but their families as well.

I have a personal connection to ALS.

My aunt Penny, my mom's sister, died from the disease in 2018.

Their cousin Lydia also passed away from ALS just this past summer.

That's two Latinas from the same family whose mothers are sisters.

And that has me wondering just how much do we know about ALS and the Latino community?

Joining me to share his ALS journey is advocate and Air Force veteran Ernie Ruiz.

Along with his wife Vanessa Ruiz, and Taryn Lopez Norley.

President and CEO of ALS Arizona Welcome, all of you.

So good to have you.

Thank you.

Thank you.

Taryn, I want to start off with you because in my family, no one really prior to my aunt's diagnosis really knew what ALS was or what it meant.

So could you please describe for our viewers what it is and how it impacts the body?

Yeah.

So what ALS is, is a motor neuron disease, and it affects the cells in the muscles and in the spinal cord.

And so once diagnosed with ALS, you'll start to see that it may affect walking talking and eventually breathing Let's talk to Ernie about how that has impacted him.

You've always been a very busy, active person.

Just one year after retiring from a 25 year military career in the spring of 2023, you started noticing some changes.

What exactly was happening to your body then?

And the neurologist diagnosed you in October of 2023 at 45 years old.

Did you know anything about ALS prior to that day?

Right.

So you didn't know what it was.

And what we know at this point is that there is no cure and that it can affect anyone.

Taryn, are certain groups that it's more commonly diagnosed in?

Yeah.

So men are more often diagnosed than women, although as you age that tends to equal up.

And then we see a lot more Caucasian men diagnosed early on with it.

And for the Latino population it's about 11% that have ALS.

So going back to that day, Ernie you didn't know much about it.

You find out that there is no cure.

There is no treatment for what you have.

What was going through your mind at that point?

Let me ask Vanessa for just a moment to talk about that experience of finding out about this.

Because this is just as much your story as it is Ernie's.

You are the primary caregiver.

Talk to me a little bit about how you came to accept this diagnosis and how you both approach it in the years since.

It's definitely gotten easier.

The first couple of months we were very sad for quite a while.

A lot of tears, a lot of uncertainty, a lot of like a lot of going down the rabbit hole of What does this mean?

What can we do?

Since then, we really have we really approach it with like a day by day and a lot of humor.

We laugh a lot together and I think learning about it in the beginning was something we both really like, tried to do and did, I didn't know anybody, I didn't know about ALS either.

I had seen it online with somebody I followed, like on Instagram, I knew what it was more so than Ernie.

I also just remember in those first couple of weeks and months just saying anything but ALS, especially from October to, because he found out in October and then we went to Barrow in December.

So those first couple of months it was just anything but ALS.

But it goes back to what we're talking about in the fact that a lot of people in our community don't know about ALS.

So my question for you, Taryn, is you know, until recently, Hispanics and Latinos were underrepresented in ALS research.

How is that changing as far as reaching out and educating and creating awareness Yeah, I think we've realized that that it is an underrepresented population.

And so there are a lot of studies now that are focusing specifically on Hispanic Latino communities.

And we want to get more involved in the stud because we need that data in order to understand the disease better.

Going back to kind of how you approach this disease, I mean, we've all been so inspired by Vanessa and Ernie's sense of humor.

And I know, Vanessa, that you have said and these are some quotes from the past where you said, you know, Ernie's really good at having ALS and that you do laugh more than you cry.

How has that approach helped you push on, push forward?

Ernie is really good at ALS, and when I say that, I mean that he doesn't, it's very rare that he complains He's been so patient.

He's, well be honest.

Before ALS he wasn't the most patient.

And ALS has definitely taught him that every day he is showing up and we're doing the things right.

We're going to the baseball game and we just went fishing last weekend.

Like we are living life with ALS We're not letting ALS live our life for us.

Well, Ernie, you said something really significant.

I think that you said you feel like you're persevering and that it doesn't feel like you're dying.

It feels like you're living.

Makes me so emotional.

What helps you keep thriving?

Yes.

And part of your community is ALS Arizona.

I know you both advocate for research and awareness and support of what ALS Arizona does.

Can you talk to us, Taryn, just a little bit about what you provide for patients and families?

Yeah.

So first of all, we want to be there for the families.

You've heard about Ernie's diagnosis and you know about your own family diagnosis.

So we are there.

We are there to support families in any way we that they will accept us into their homes.

And so we have our medical equip equipment loan closet, which is the largest program we offer, will have powered wheelchairs, bathroom equipment, everything that someone needs to keep them in their home.

And then we have support groups.

We also have exciting things which we got to see Ernie go down the hill skiing.

We have our quality of life programs, which we all love, and that's really about living with ALS, like Ernie and Vanessa have both shared here today.

But we want to go skiing.

We want to go water skiing.

We want to go horseback riding, golfing, all of those activities so that you can really live.

When you're diagnosed with ALS.

You do beautiful work.

I want to mention that two very important events are coming up Walk ALS Tucson.

Walk ALS Phoenix this November.

Ernie has a team for both walks called Shift Happens.

I have to say that slowly.

So can you tell me a little bit about The Shift Show that's happening in the Phoenix walk and then how people can get involved in supporting not only what you do, maybe joining Ernie's team or creating a team of their own.

Yes.

So The Shift Show is put together by Ernie's friends and Vanessa.

They are putting on a car show for us, so it's going to be we're hoping to have over 200 cars out at Salt River Fields, and be a part of our walk.

And so I think it's going to be a really cool opportunity.

I don't know, Ernie, is your truck going to be there?

Hence the name, The Shift Show.

Yes.

Yeah.

Not now, but I want to encourage everybody to go and get involved And you are just so inspirational.

I can't say that enough.

And I'm so thankful that you are here to be able to share your story and your journey with everyone.

So thank you, Ernie, very much.

And Vanessa, thank you.

You know, you are just an angel, Oh thank you.

thank you for being here and sharing the journey with us as well.

And Taryn, keep doing the great work.

Thank you.

Yeah.

We appreciate you so much.

Thank you.

We will continue having conversations like these because they are important and they matter to you.

I'm Catherine Anaya.

Thank you for watching.