Ep.#112: Austin 1st Foundation

We share how Austin’s life and a years-long search for answers led the Terlings to build a foundation for families facing rare disease. We dig into research partnerships, caregiver training, and the Aces for Austin golf scramble that turns community into impact.

• one in ten Americans affected by rare disease 
• Austin’s UBA5 journey from birth to diagnosis 
• the four pillars: research, awareness, change, support 
• insurance gaps and noncovered equipment and therapies 
• funding drug repurposing for UBA5 
• support for UAB’s Undiagnosed Diseases Program 
• Children’s of Alabama PICU expansion and COACHES training 
• Aces for Austin event details and growth 
• volunteer-run model and near net-zero event costs 
• how stories personalize statistics and drive action

Austin1stfoundation.org 

Transcript

Meet The Austin First Foundation

SPEAKER_00 0:00

This is the Good Neighbor Podcast, the place where local businesses and neighbors come together. Here's your host, Susanna Hodges.

SPEAKER_04 0:12

Welcome. And with me today is Anthony and Lindsay Turling with the Austin First Foundation, right here in Auburn in Opalika, Alabama. Welcome.

SPEAKER_02 0:22

Thank you for having us.

SPEAKER_01 0:24

Yeah, we're excited. Thank you, Susanna.

SPEAKER_04 0:26

So tell me a little bit about the Austin First Foundation.

SPEAKER_01 0:31

So first, we just to tell you our mission statement, we're champions for rare disease to help families affected in Alabama and beyond. Just very simple. We we support all things rare disease. And just to kind of tell you a little bit about rare disease, there's over 7,000 types of rare diseases. And then out of Americans, there's one in 10 Americans that live with a rare disease. So this is not a small issue. This is not an individual state. This is not an individual country issue. This is a worldwide issue. His condition is known as UBA 5 mutation. It's a genetic mutation. To this day, there's still only about 50 known cases. Yes, five zero known cases. So we we like to say, yes, one in 10 Americans are affected, but not every rare disease has that many.

Austin’s Story And Diagnosis Journey

SPEAKER_04 2:01

Has those numbers, yeah. Well, Lindsay, tell me a little bit about um Austin. And obviously the foundation is comes from your experience. So tell us a little bit about Austin.

SPEAKER_02 2:14

Um, you know, he is that child that changed the atmosphere of an um, good or bad. You know, I mean, it could go both ways, but he you would have never known from the time that he was born until about three or four that there was anything wrong with him. Um the the common person that looked at a child would not necessarily know there was not anything that stood out, other than the fact that you know he wasn't sitting up, he couldn't walk, he couldn't talk, those type of things. So from the start, everything was as normal as we could have, you know, kind of thought. Certain things happened, and it took you know about four years for us to actually get his diagnosis. Um, we knew at the time that it was going to be terminal because we did not know you know how long he would or would not be able to, you know, sustain his own life, and that's because where we were in wanting to start a competition was when he got diagnosed. We were told about two other families in the United States that their child had been diagnosed within the last couple of months as well. Um, it wasn't something you could Google, so it was very hard as parents and and as doctors to help us. You know, if you don't know anything about it, how can you help somebody to fix it that's right? And so that's kind of where our mission came in was it you've got to be talking about sometimes it is hard to talk about it, it's hard for someone to hear it. Um if you don't spread the word to know what it is, how could you ever possibly stop what's happening? Which is unfortunately, you don't make it very far. I consider 1800 not very far.

SPEAKER_04 4:34

Right. And he did he passed away at nine, is that right?

SPEAKER_02 4:38

Yes.

SPEAKER_04 4:38

Well he lived a pretty good long while was that longer than they had expected.

SPEAKER_02 4:44

I think I think so personally. Um we we did come to a point that we um we knew for sure that things were going downhill progressively, um a lot quicker than they had in the past, and that's what happened that you are down. You know, it's it's an evil cycle to move your muscles to try to gain some type of losing body mass. Um that that's where all his early life at least golden years because that's how being intimated with a dude on his throat. Sometimes we had one girl that could make him frown, and it nothing he ever did, but you could not make him mad because he was the happiest child for everything that he was going through, and we know he had to be happy in some level of pain, regardless if he could communicate that or not.

Living With An Ultra-Rare Condition

SPEAKER_04 6:02

Right. So, Anthony, the Austin First Foundation. What what is uh you guys are obviously it's for the rare diseases, but what do you do? Do you are you raising money for research? What are some of the things that you guys do?

SPEAKER_01 6:16

Yeah, there's four words really when Lindsay and I sat down and started um talking about creating something to help people through this. We actually started that conversation before Austin was even diagnosed. Um it was something that just is a passion for us, it's something that's been instilled in us through our families and the people we we surround ourselves with just to give back. Um, and so four words really came to life, and that you see that on AustinFirst.org uh right on the homepage. Research, awareness, change, and support. My wife, Lindsay, already talked about awareness. Awareness is super key to us because if you don't know and you don't understand, then you don't know A, that there's issues out there like this, and then B, how to help, right? And then you probably open up more to you know more people than you think that have a rare disease, going back to that one in 10 in America. Um, and to answer your question, yes, we've tried to find every way we can through those four words and through our mission to make impact, whether it's creating awareness or providing research dollars, providing money to support families walking the journey that we've been through. You know, give you an example. There were things that insurance will not cover, regardless if you do have a diagnosis, whether that's medical equipment, whether that's uh treatments, things like that. I'll I'll add that 90% of all rare diseases do not have FDA-approved treatments, let alone cures, but just treatments.

SPEAKER_04 7:45

So it's hard to get insurance to cover those.

Mission Pillars: Research, Awareness, Support

SPEAKER_01 7:47

Yes, and and Lindsay is way more knowledgeable on the insurance side than I ever will be. She has a professional background in it, but research, just talking about that specifically through partnerships and connections, actually, with families who have created their own foundation with their children also having the UBA 5 mutation. And that's the story and the power of parents and the power of people getting together and saying, Hey, I know my child has a situation that's extremely difficult and very um, I mean, it's it's rare, it's ultra rare. I mean, when you're talking only 50 known cases in the world, that there's not even a term for that. Um, and so Raiden Science Foundation is actually out of Oregon, and Raiden is the child, and he has UBA 5. They're very involved in research all across this country, but one in particular is Oregon Health Science University. And they, through Dr. Jonathan Pruneda, he is the researcher, as I call him, the scientist. Uh, he researches drug repurposing for UBA 5. So current drugs that are FDA approved on the market that they are trying to repurpose to improve the lives of kids with UBA 5. And it's showing signs of improving and working. So we have, we have through ACES for Austin the Golf Tournament, through various just general donations, all the support that we get, um, we give a portion of those proceeds annually to OHSU to fund that research program along with other groups that do. So if there are research programs that support UBA 5, but also rare disease as a whole, we want to we want to be involved in it. And I want to mention really quickly the two groups in Alabama that are our key key partners and friends and really cared for Austin, um, was Children's Hospital of Alabama and UAB. Um, Lindsay mentioned earlier about him being diagnosed around four years old. Well, it went through what's called the Undiagnosed Disease Network. And then the undiagnosed disease program is at UAB, which is part of that network. Alabama is very blessed to have amazing medical facilities, including research. Um, and so UAB's undiagnosed disease program is actually part of how Austin was diagnosed. So we have helped fund that program because a lot of those programs help offer testing that is not usually affordable or available to those that have an undiagnosed disease. Because if you have a disease and you're being misdiagnosed or you're not finding a diagnosis, as one doctor told Lindsay and I when we went to Vanderbilt University trying to find answers on Austin, was you need keys to the door, you need insurance. And so we need to give you things that will allow these doors to be open, whether it's for therapies, whether it's for medical equipment. Um, and then children's hospital is obviously the hospital that cared for Austin the most. Um and their foundation, as many people don't realize, is yes, they they are they are funded, but they need a lot of philanthropy dollars. They need a lot of your dollars, they need a lot of foundations like us supporting them. And I'm sure Lindsay makes sure I don't miss anything, but we have funded anything from a PICU expansion uh for their their pediatric ICU. We have funded a program called Coaches, which is basically where Lindsay and I were trained in a simulation lab at children's on how to care for Austin after he got his trach, which is a tracheotomy surgery. Right. And that is daily care, and that is not something just any person can do without proper medical care or training. And so during those years, which is now what Lindsay, five, six years ago, seven years ago. Um, we were we were being yes, we we were being trained in that lab. What the issue was is that lab could not take it on the road, meaning you couldn't go train community hospitals, you couldn't go train people in the schools like nurses. So that coach's program we have funded, and many others have funded, which now that program is going outside of children's hospital on the road and training people all across Alabama.

SPEAKER_04 12:21

That's awesome.

SPEAKER_01 12:22

So those three are our kind of main groups that we support OHSU, Children's Hospital, and UAB.

SPEAKER_04 12:28

Oh, you've got a uh fundraiser coming up here pretty soon in May.

SPEAKER_01 12:33

We do.

unknown 12:34

We do.

SPEAKER_04 12:35

What do you say? Tell me about that, Lindsay.

Funding Partners And Real-World Impact

SPEAKER_02 12:38

So ACES for Austin is our large annual event that we have. Um it is a golf scramble. We have been extremely um lucky, I think, you know, the lack of better words, fortunate to have people really dive into it and get enthusiastic about it. Um we have people that travel from states away. We we've started we have a goal of getting a person from every actually, this is just my goal that everybody laughs at me, but I have a goal of getting at least one person from every single state. I mean, we might have gotten like 10 to 15, so we've got we've got a little bit more to go. But like it's just it's a good day on the golf course. I myself personally ride a golf cart around and go and see every team. Um I'm typically with the person taking pictures, so I have a reason, but it it is just we have we get out there, we have fun, um, they're so competitive, and we end up raising a good bit of money that we do end up obviously donating to one of the foundations and organizations that Anthony mentioned. Um and in three years, I think that we've been able to raise and donate a little over a hundred and one thousand dollars. Yeah, I mean that's that just speaks volume how key the awareness part is that we went from having I don't know what a hundred golfers the first year, less than a hundred golfers, because we were deciding whether or not we needed to have two flights two sets of groups or we would have so many players. Um, and we didn't want to have to close registration, but that just that is very humbling for us, and we know how much it makes a difference to be able to get that many people in one place and all there just for one reason, and that is to be able to spread awareness for rare diseases and obviously also to honor Austin's legacy.

SPEAKER_01 15:00

Um it's very special, and yeah, and I'll add to that um it's our fourth annual, as she mentioned, and you know, without Auburn Opalica, the business community, the individuals, you know, Grand National um is where it's held, and I'll you know want to say it's May 18th uh of this year at Grand National, Robert Trent Jones on the Lakes course. So A, it's the golf course speaks for itself. It's one of the world class golf course right here in Opalica. And um, as Lindsay said, we've had an unbelievable turnout. I mean, I think we had, like she said, seven to ten states last year. We're expecting more. Um, and you can golf, sponsor, and donate. You know, a lot of people I mess with, they're like, Well, I don't golf. I said, Hey, I don't either. Um, but you you there's a way to support, and and as Lindsay said, you know, the golf tournament for us was a great way that we knew we could get people in person having a fun time, but knowing that it's for something bigger. Um, and and our biggest thing is with our partners with UAB and Children's. As we were talking with them about the golf tournament a few weeks ago, and we said we have a goal that we want people to know you too. We want people to give the Children's Hospital Foundation because there is other Austins out there that may not have as rare of a disease, but also are going through something medically challenging, right? And so uh it's just a great way to fellowship, it's a great way to raise money. Um, and it's also just a consistent way that our organization can have an impact with an event um that allows people to get to know Lindsay and I, because we her and I realize that Austin is not here anymore, and that, you know, we've actually just recently started through our social media um a thing called Turling Tuesday, which is a way that those that never had the opportunity to get to know Austin um didn't get to see him. And also, there's many people that come to this golf tournament and they don't know anything about Austin, they just know it's called aces for Austin and they know it's about rare disease, and they know Lindsay and I. But we we really try to make sure that they know him and understand that you know, his bright light, his impact, his smile, as Lindsay mentioned earlier, um, is really as our blog says, when you have something that you know, a child with a diagnosis like that, or an individual with a diagnosis, it's not just a statistic, there's a story.

SPEAKER_04 17:35

Absolutely. There's people behind that, yes.

Drug Repurposing And UBA5 Research

SPEAKER_01 17:39

And so the golf tournament has been a great way. So I encourage people, registrations live, it's on Austinfirst.org slash events. Um, you can golf, sponsor, and you can donate. And and donate, we do this is a fun golf tournament. Um, we say, hey, you're gonna get uh nice gifts, you're gonna get nice food, you're gonna have a first class experience. Um, but you're also coming to help us raise money. And what we're really proud of is we are very close to being at a net zero of all proceeds, which means we are almost covered with all of our expenses. We want every dollar that someone gives our foundation to go right towards our mission. Not we are zero paid employees, we have no uh, it's all volunteers. It's me and Lindsay, it's our board, and many, many others. Um, and Susanna, you and Vince and and everyone at your group has always been from day one big on helping us create awareness, and we can't thank you enough.

SPEAKER_04 18:42

And it's our pleasure to do that. What a what a wonderful foundation that you guys have built and what a legacy for Austin in his memory. Just beautiful. Let's go over one more time how to find you guys. So if anybody wants to register for the event or just to learn more about what you do, um, what are your websites, socials, that kind of thing?

SPEAKER_01 19:04

Yeah, website, you can find us at AustinFirst.org. Uh that's one S T instead of spelling it normal. Uh, and then on social media on Instagram and Facebook, just look up Austin First Foundation and you'll be able to find us there. And all the information on the golf tournament, uh, rare disease day is is uh uh February 28th. Um, so you know, please uh show some awareness for that. And you'll see all the other things we do, but you can register for the golf tournament. Uh get in touch with us if you have questions about uh what Austin First does, um, however, we can explain what we do and and the impact we're making, we'd love to.

SPEAKER_04 19:43

I was looking at your website uh before we did our this conversation, and I really like your blog page. Lots of information there and lots of uh pictures and and seeing Austin. And it's just it's a very it's a very good website to find more about Austin.

SPEAKER_01 20:00

Thank you. We uh between Lindsay and I, we work real hard. And uh the blog has been a great way for us to Lindsay writes a lot. Um she wrote a lot of things while Austin was here, and uh it turned into what we didn't realize was gonna be the blog. And so a lot of those are personal. Um, as one of the blog titles is helping is healing, and that's really the bottom line of what Lindsay and I at our core uh really just wanted to do with this is yes, it's personal, it's painful, but it also is a way and a little selfish on carrying on our son's legacy and keeping his hand alive. Um, but but the way we help people heals us, and we hope heals other people.

SPEAKER_04 20:47

Absolutely. Well, I appreciate you guys spending time with me. Thank you so much, Anthony and Lindsay, for joining me today, and I know you're gonna have a great event in May.

SPEAKER_01 20:56

Thank you so much.

SPEAKER_00 20:59

Thank you for listening to the Good Neighbor Podcast Auburn. To nominate your favorite local businesses to be featured on the show, go to gnpauburn.com. That's gnpauburn.com or call three three four four two nine seven four zero.