Interview with Bernie Williams on National Rare Disease Day

February 29th is National Rare Disease Day. The day is meant to raise awareness for rare diseases and their impact on patients’ lives. Although Bernie Williams is most known for his legendary Yankees career, he has been an outspoken advocate for interstitial lung disease (ILD) since 2017 in honor of his father, whom he lost due to the disease. ILD impacts roughly 50,000 Americans each year. It causes irreversible scarring of the lungs that can make it very to breathe. National Rare Disease Day presents an opportunity to raise awareness about ILD and how it impacts patients and their families.

Boehringer Ingelheim

On top of raising awareness about the disease and its different forms, Williams worked to develop a program, Tune In To Lung Health, alongside Boehringer Ingelheim to provide resources to people living with ILD that explore how music and breathing can help them cope with the physical and emotional disease burden. In honor of Rare Disease Day, Williams sat down to talk about his advocacy and Tune In To Lung Health. He also provided thoughts on the 2024 Yankees and touched on his own time in pinstripes, as well.

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Esteban Rivera: In working in healthcare advocacy and education, I’ve learned how holistic approaches to managing one’s health can be extremely important to patients. The Tune In To Lung Health program is a perfect example of that. As you’ve spoken to people who have participated in the program, what have they said about how special it’s been to use music as a tool to manage their health?

Bernie Williams: I’m sure that it has helped them deal with the burden of ILD. In this case Tune In To Lung Health is the website that we’re trying to get people to go to use those resources. Education, vocal, and breathing exercises are some things that we take for granted as humans. We breathe in and out and sometimes we don’t take notice of the fact that it’s such an important part of our daily lives. But for people that have ILD, every breath is so precious, and they never take that for granted. So having breathing exercises to enhance your capacity to breathe is a really important thing within the website.

Also, a playlist of songs from the likes of Frank Sinatra to Stevie Wonder and everything in between is designed to get people relaxed and in a good mood and positive attitude. And not only for the patients, but for the caregivers as well. It can help them get away a little bit from the burden of this disease and put themselves in a good space mentally to deal with their situation. I think it’s a really, really great resource to have.

ER: One thing you mentioned that I noticed is prominent in the program is the attention paid to caregivers. As you’ve spoken to them, what kind of feedback have they’ve given you about how they’ve experienced participating in the program alongside their loved ones?

BW: I think the part of the caregiver, as you said, is very underestimated. Having to be in a situation where you have to take care of a loved one, it’s important to not necessarily be completely knowledgeable of what’s happening, but at least have an opportunity to get educated about what the situation dealing with. I think it just puts you in a great position to manage the situation. I mean, obviously you’re not the person with the burden, but you are easing the life of the person that has that burden. The role of a caregiver is so important. Having the opportunity to be educated, understand the situation, the symptoms, and what things to look for is an important thing to have. Tune In To Lung Health has a lot of information on that. So it has been very positive for [caregivers] to access that resource.

ER: Of course advocacy and education are year round activities, but what kind of impact do you think it has for people with rare diseases to have a specific day where their lived experiences are elevated?

BW: Rare Disease Day is a very important day – it highlights and amplifies the voices of people that are suffering from these diseases. I think we get so caught up in our everyday lives that we sometimes just lost sight of the fact that there are people living with these conditions in this world also that need to be highlighted, whether it’s ILD or any other rare disease. I think it’s really important for people to count their blessings and be aware of the people in these situations.

ER: Is there anything else you’d like to share about ILD or Rare Disease Day?

BW: Highlighting Tune In To Lung Health’s resources. The information about ILD, the music, the education and the breathing exercises are all very important.

Boehringer Ingelheim

ER: One thing about Yankees history – especially in the last three decades – has been about having Latino stars front and center in the organization, whether that be you, Jorge Posada, Alex Rodriguez, and more. What do you think it does for the Latin Yankee community to have somebody like Juan Soto who has been brought in to lead the team and potentially bring them back to the World Series?

BW: I think it was a great thing for the Yankees to acquire Juan Soto. I think that he’s going to be a great asset to the team. I had an opportunity to see him and the rest of the team work out in spring training – he is a very positive guy. He has this very thing that makes us Latin players very unique, you know, to have that flair and outwardly showing passion for the game – playing with a smile on his face and savoring these moments that you have as professional players. With hindsight, I can tell you that they will go away very quickly because life moves fast, it’s such a precious time.

For the Latin community, I think it’s a great thing for the team to have Soto. I think he’s going to be a catalyst and another great Latin hero the kids that are going to be looking up to him and trying to emulate him. Especially now that he’s wearing the pinstripes, it’s going to give him even more exposure playing with one of the premier teams in the big leagues. It’s a, it’s a win-win for both him and the team.

ER: You spoke about spring training, and I’m sure that you’ve had conversations with some of the younger players. Early on in your professional career, you were under a lot of pressure to produce right away. Kids like Jasson Domínguez and Spencer Jones are going to be in similar positions once they’re with the big league club and expected to produce. From the mental side of things, how would you approach handling the adversity that will inevitably come to them, or how did you when you were playing?

BW: Yeah, that’s a really interesting question because it touches on things that are very near and dear to my heart playing in this great city of New York. There were a lot of expectations on performing and producing and putting some numbers, collectively and individually. When trying to put those sum of the parts together to get to that elusive goal of having a championship and a World Series, my experience told me that you can only control the things that you can control.

Putting a lot of energy and things that you have no control of is counterproductive. It brings you a lot of anxiety and extra pressure that you don’t need. So I think my advice to these guys – and I know it’s kind of easier said than done – is not to pay attention to the things that you can’t control and let everything else fall where it may. Taking care of the present is paramount, then the future is going to take care of itself. And if you are able to do the things that you are supposed to do as far as your preparation, your work ethic, the way that you learn how to play, I think everything else is going to fall into place.

We have a God given ability to play this game at this level and you learn a lot about yourself playing the game. But at the same time, you learn how to make sure that you take care of the things that you can’t take care of and let everything else handle itself. To me, that will be the most important thing that I would that I would tell them.

ER: Zooming out, what are you most excited about to watch the Yankees in the 2024 season?

BW: Well, I think this version of the Yankees has been going through the highs and lows of having great success and great disappointment. In the years they have been building this team to win a championship, they have fallen just a tad short. So I think that all the players that have been with the team for all this time know what the expectations are. And I think all the players that are coming onto the team are buying into that as well. I think there’s a collective sense of excitement and a great, positive attitude towards the season. Like every year, it all depends on having the guys healthy when the time counts and produce the way they’re expected to. If they do that, I think they have a great chance of winning a championship this year and take that big monkey off their back. There’s a lot of excitement for this particular iteration of the team and I think they’re going to do well. Hopefully they’ll stay healthy through the entire year and have all the pieces come together.

Boehringer Ingelheim

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Thanks to Tune In To Health for connecting us with Bernie, and of course many thanks to the man himself for his time.