Rare Genetic Diseases with Kira Dineen From The DNA Today Podcast

Speaker 1 (00:02)

Hi and welcome to Cause bods. I'm your host, Matthew Passy. Here at Cause Bods, we have one simple mission to highlight the amazing folks who are using podcasts as a way to raise awareness for good causes and make the world is a better place, whether it's in their own local community or they're taking on global issues. Please visit us@callspots.org where you can learn about our guest show, their favorite charitable cause, join our Facebook group with resources for Cause based podcasters and find a link where you yourself could be a guest here on Causepods. Again, that's all@causepods.org.

Speaker 2 (00:39)

All right, taking you up to the state of Connecticut. And we are chatting with Kira Denin. She is the host and the creator of DNA Today. And this is a genetics podcast and we're going to talk about why she's doing this and she's actually been out for a long time, so a lot of great lessons we can learn from her as a fantastic podcaster. Kir, thank you so much for joining us on Call Spots today.

Speaker 3 (01:00)

Thank you for having me on. Mathew. You've got such a cool show and that you really like. As you've said in other episodes, I feel like a lot of podcasters listen and that's your kind of target audience and just cool that you're able to highlight shows that are hopefully making an impact in the world.

Speaker 2 (01:16)

We hope so. Every so often, somebody sneaks into I think it's just doing it for sale for sure reasons, but for the most part, we really like folks who are having an impact in your world. So with DNA Today, before we get into why you did it, going to the background, what is the impact in the world that DNA Today is trying to get across? Because it's very technical in nature that you're doing. So probably needs a little bit of help for the audience as far as what is the cause that we're after today.

Speaker 3 (01:41)

Sure. Yeah. So I think with the podcast, I started it ten years ago, so I was in high school when I started it. I know I'm a masters in genetics, so it's grown with me. And so really the purpose of it for me, selfishly when I started talking about for selfish reasons. So when I started it, it was really to learn more about careers in genetics and educate other people about that as I was learning about it, so they could join me in that journey. And then as I got more into it, I really wanted to use it as a platform to educate people about genetics. So in a very general sense, some of that is like patient advocates, having them on and being able to highlight their perspective in terms of different disorders and educating people in the community about that, as well as the general population, and then just educating people within the genetics field. So if you're working as a healthcare provider in genetics, you're working in a lab, being able to keep you updated on the field, news, different technologies, ethical considerations. Obviously, genetics moves very fast. So it's something that we really want to keep people updated with because once you graduate, if you're not keeping up with the field, you're really missing out on major advancements.

Speaker 3 (02:52)

So I would say those are the two reasons we do the show. But I have to say my favorite episodes are definitely the patient advocate interviews where I get to just chat with people about the disorder they have or their child has or someone in their family and be able to highlight that and give them a platform to share that.

Speaker 2 (03:08)

It's so interesting that you started this while you were in high school and that since you started, you've gone on to finish schooling and get your Masters. Has the podcast, was it helpful or did you play any role in your education, in your Master's program? Because I think that's a facet of podcasting and a lot of people don't think about that. This can really be an educational tool, not just for the audience, but even for the content creators themselves completely.

Speaker 3 (03:35)

I think it held me responsible of, okay, I'm producing this show. I've got to keep episodes coming out and I'm learning while I'm prepping for the episodes, recording the episodes, and then I'm going to remember it more too, because I'm like, oh yeah, I did an episode about chromosomes, so now I'm going to remember about chromosomes. We get 23 from each parent and just different facets about that information. So I found it incredibly helpful in my education because even textbook learning in the classroom, it's hard to say, okay, there's like, I think, like 7000 rare diseases, right? I'm not going to know all of them. I don't, I'm never going to. But as I'm learning them, instead of just reading in a textbook, like I'm talking to a person with that disorder or someone that cares for a person with that disorder. And so I'm going to remember and be like, oh, someone with, let's say, Lynn syndrome. Oh, I interviewed Georgia Hearst about that. That's right. This person, her family had this cancer development, and she had this surgery. And so I found it, and I still do find it so helpful that I'm not just reading in a textbook.

Speaker 3 (04:39)

Even when I was taking my boards exam and just exams during my education, it was so much easier to be like, oh, this is on the page. I have to remember the disorder. Let me remember a person that has it. And I think that personalizes it so much and helped me so much. And I want to say all the jobs that I've had and because I started this before I even started working, all the jobs I've had is because of this podcast and all of the clients I've had and everything. So it's not just been great for the community but just even myself and learning in my own career.

Speaker 2 (05:08)

But did it come up at all in classrooms or with professors or like, were you able to get any credit towards the work that you're doing on the side or really integrate this? I know you use that knowledge personally, but we're able to integrate this actual content into anything you were doing as far as your schooling and education.

Speaker 3 (05:28)

Yeah, so the show when I was in high school actually started as an independent project. So that was instead of me taking a a class that was in place for it, and then as I was in undergrad, some of my professors would use episodes in terms of, like, a homework assignment and use it just for other people that were like, oh, someone reached out to them. I want to learn about genetic counseling. They're like, oh, check out this podcast. This girl Kira is doing this. And once I hit graduate school, my graduate school has actually been a sponsor of my show. So I think that's been really cool that I've been able to highlight my experience in their grad program and they have been financially supporting the show. So, yeah, definitely very integrated and definitely allowed for a lot of opportunities for myself and the programs that I've been involved in as a student.

Speaker 2 (06:13)

And so I'm just curious, why the focus on rare diseases in general? Was there something in your life or something that happened personally that drove you in this direction or just kind of where the education and where the research took you?

Speaker 3 (06:30)

Yeah, I would love to be able to say, like, oh, I have this personal experience, and most people, if they're involved in the rare disease community, they have that and they have a story behind that. For me, it was more just learning about the community and how close people are in the community. And the National Organizations for Rare Disorders is headquartered in Connecticut, in the town next to my hometown. So that kind of just happened, and I was like, wait a minute, I passed this Nord place on the way to my grandparents all the time. What is this? And so I kind of got involved in that way of starting their student newsletter and different projects with them. So I think just learning through connecting with people and just seeing how much more support the rare disease community needs. And also, I think in terms of the general population, how much we can learn from rare diseases when we see, okay, this disorder is really helping us understand something about the human body. So exceptions are very interesting in terms of studies, and so we can learn a lot about the human body and just general information by studying rare disorders.

Speaker 3 (07:39)

So I would give an example. There's a disorder that's like an aging disorder where people are 1012, but they look like they're like 40, 50. And so I would say that's like an example progeria, I believe, is the name of it. So looking at that disorder and studying that can give us a lot of information about human aging. So I think there's also this larger impact for humans in general, which was also just interesting to me to just focus on genetics. But rare diseases just come up so much, and individually they're rare, but collectively they're common. So one in ten Americans have a rare disorder. So I remember hearing that stat and just blew my mind. I was like, Wait, 10% of people I meet are going to have a rare disorder. That seems crazy, but I think people don't quite understand just how common it is to have a rare disorder.

Speaker 2 (08:26)

Well, and I take it by the nature of the disease being that rare that many people don't realize they have one. Right. Because the symptoms can be very impactful on someone's day to day life, and for others, it's minor things that they don't realize is all part of this larger picture that somebody hasn't quite diagnosed with them.

Speaker 3 (08:47)

Exactly. Mathew so when we're looking at it, a lot of disorders are vastly under diagnosed, as you're saying, and a lot of people may have very general symptoms. So it becomes very hard to diagnose unless there's something very specific. It can be tough. Then again, genetic changing has rapidly changed in the last 1015 years. So now we're able to do testing such as whole exome or whole genome. Whole genome. We're looking at every single genetic letter in your genome. So we have, like, all of our genetic information that's our genome. And so by looking at and reading through every single letter that would be the genome, and then looking at the exome, we're just looking at the genes that are active. So a lot of genetic testing is shifting to this. Instead of just, let's look at a couple of genes, it's like, you know what, let's just skip that. In a lot of cases, let's head right towards the active genes. If we don't find something in there that's different, that can give us a diagnosis, let's look at all of the letters in our genome. So I think even just the genetic testing and technology and the accessibility of that has changed so much in terms of being able to diagnose.

Speaker 3 (09:59)

So I've seen the shift just in the ten years of the show.

Speaker 2 (10:03)

Interesting. So you just said it, you've been doing the show for ten years, which, when it comes to cause passy, is a little bit more rare. Most of the folks who join us on the show, they've just been starting out. They've been doing it for a little while. They're kind of still getting their feet under them. But having done this for ten years, starting when you were in high school, you have seen the podcast Landscape Change, I'm sure, in those times. And you've probably learned a lot of things about podcasting and growing an audience in production that people could find really valuable. I just want to start with from when you started in high school to today, what have been some of the biggest changes to podcasting itself? And if you've had to adapt or if you've had to change the show dramatically because of any of those.

Speaker 3 (10:47)

So I think when I started podcasting, this was like 2011, when I said to people, oh, yeah, I have a podcast, they were like, what is that? Right? So we've seen that change. Basically, it's in 2014 when cereal came out. That's when people know what a podcast was. Cereal changed the game in terms of podcasting being a household term. So I think I used to have to explain, oh, it's like an Internet radio show. And now it's just like, I have a podcast. People are like, whoa, cool, what is it about? So I think that has shifted for the past, whatever. I guess that was like eight years ago now. But I think in terms of just podcasting and how I've had to adapt, something that I think we're both looking at is shifting to video podcasts. So for the longest time, I was like, no, I'm not a YouTuber. I don't do that. I'm an audio podcaster. I'm a Purist, right? So then things have shifted a lot. YouTube has become much bigger. And so the beginning of 2021, I believe we've started recording pretty much all of our episodes as a video. So that has been a big shift.

Speaker 3 (11:48)

And I think YouTube is going to have a huge impact in podcasting in the next couple of years. Because I don't know if you saw Matthew, but YouTube hired head of podcasting at YouTube. So I'm like, all right, that means there are things on the horizon at YouTube. So I think that's been a major shift. Most of our episodes are still consumed via just the audio. So through major podcasting apps like Google, Apple, Spotify, Overcast, all of those. But yeah, I would say that's been a big shift. And I think just with the pandemic, people are much more used to hopping on platforms to record, like Zoom. We both use Riverside FM. So I think people are also just they're not like, where do I have to travel for this podcast? People just get right away like, oh, we're just going to record virtually for the most part. So I think that's some big changes that I've seen just in terms of people understanding podcasts and also just being guests on podcasts, that's just been a little bit easier. I think there's less onboarding with guests than there used to be.

Speaker 2 (12:50)

So now the big question that everybody wants to know in podcasting, and I have to imagine, with the success of your show, with the experience and with the opportunities that are provided for you, what is it that you have done or what is it that you have found to be the most successful way to grow your podcast, to increase its exposure and to increase audience.

Speaker 3 (13:12)

That is like the number one question, right? Yeah. And that's always something that I love asking podcasters too, because I want to learn. It's always something you're continuously learning. I think for me, I've really focused on and I recommend this for anyone that's starting a podcast or recently started of really looking at what is your focus, right? So some people that would look at my podcast say, you don't have a focus, it's genetics that's so big, and others say you only talk about genetics. So that's almost the answers you want. You want some people say it's too big and some people say it's too small and you're like, it's perfect then. So I think it's really choosing what your focus is. Obviously there's popular podcasts like The Daily that are just like news, right, but they've got a huge crew behind them and a ton of advertising, marketing, money and budget. So I think for beginner podcasters, you want to choose that topic and find your niche, find your target audience. So my target audience is people working in genetics, and then my backup one, making my target a little bit bigger, is looking at people that are affected by genetic condition.

Speaker 3 (14:17)

So those are my two areas. And then outside of that, it's just general population people that are like, genetics is cool. I'm not targeting those people necessarily, but they end up listening. So I think it's really important to look at that and have a focus for your show. If you just have like a general talk show, I don't think unless you're Jordan Harbinger, that has great and he doesn't have the focus of the show, but his is a little bit more general than I'd say, like a typical podcast because he has so much clout. So if you're just kind of like an average Joe like me, then I think it's important to have that focus and then building that community of seeing like, okay, where are your listeners right now? And start integrating yourself into those communities online. So, for me, I'm also a genetic counselor, so that's what my career is, genetic counseling. So I'm very active in my genetic counseling community. I go to the conferences, I'm very active on hashtag, gene chat and so in all of these digital groups. So I think for me it's like, okay, focus on that and also the rare diseases that I've talked about in those communities.

Speaker 3 (15:19)

So I think it's finding, all right, don't just put it out to the universe. Find where your listeners are active and start becoming an active member within that so that you are engaging. And that's something that I'm actively working on too. I'm definitely not an expert at it. I'm always trying to do better with the engagement.

Speaker 2 (15:34)

So here's a question then, because I think what you're saying is really good advice. It is something that we encourage everyone to do, is to be well focused, find your communities, talk to them there. But then sometimes you get people that advice. What happens is they join a bunch of Facebook groups or Discord or a Slack channel, whatever, and they get in there and they think, great, I'm part of a group now. Here's my podcast, here's my podcast, here's my podcast, here's my podcast. And the next thing you know, they are now Paris of that group, or they've been booted from the group, or they're not getting a response because nobody wants to engage with a walking, talking billboard. So how do you encourage a community that you've recently joined to check out your content without turning them off to you? By being overly salesy.

Speaker 3 (16:17)

I think for the first, I don't know, maybe a month or something, don't even mention your show, just organically. Talk with people in these communities. And I would say the first time, maybe you mentioned it after a month or so. If someone has a post like, hey, I'm looking for relating to a previous episode you had about Row being overturned with Ariel Ness and Blatantt, like, okay, if someone's posting about while Roe is overturned, anybody have any resources or places to donate then if I were you, Matthew, I'd say like, okay, I've been in this group about a month now. In the comment, I'll say, yes, I'm appalled at this happening, even though we knew it was going to. So I produce an episode about this, and I also recommend people join Ariel's whole movement, really, of starting to put ads in front of your show like you've been doing for awareness, for how important abortions are, right? So I think doing things more organically and then after some comments like that, then you can post something in the group like, hey, I have a podcast about this, but I love ideas of what you guys would want to hear on the show, right?

Speaker 3 (17:22)

So I find great engagement even when I am on Instagram and I have an interview coming up, I've been trying the last few months saying, okay, let me put in my story. Hey, I'm interviewing this person. What do you guys want me to ask them? And then during the show, I'm like, hey, Ashley asked a really good question about this, matthew, if you're my guest, really wants to know why you started Cause pods. And so I think being able to integrate that and then reaching out to that listener and say, hey, did you listen to the episode yet? Because I asked your question on it. So I think just going above and beyond it and it doesn't take long to do these things, right, especially if you're active on social. So those are things that have been recent goals of mine, and I've definitely found success with that. I've even had episodes where it's all listener questions and I'm like, guys, you have so many questions, I don't even get to ask my own. So I think that that can be really good and just really trying hard with the engagement. Because honestly, unless you're a major, huge podcast, it doesn't matter how many downloads you're getting, it really matters the engagement.

Speaker 3 (18:23)

Because if you're looking at monitoring and all that, the sponsors want to see engagement. If you've got 1000 people that listen that don't care, whatever, if you've got 100 listeners that if you recommend something, they're going to go out and buy it, that's way more valuable.

Speaker 2 (18:38)

I love what you're suggesting because one, it doesn't cost any money, right?

Speaker 3 (18:44)

Yeah. I'm like cheap. I'm like, let's not spend money, let's spend time.

Speaker 2 (18:48)

Right? Like it doesn't cost any money to reach out to the community. Ask them to contribute questions, ask them for feedback. We have a client who does this on their show. They actually make it as part of one of their lower tier patreon offerings, which is if you are a supporter of the show, you get to find out who the guests ahead of time. You get to submit questions and then you read it. But the other thing that it does, and it works either as the patreon model or just in your case, as you're doing that early community building, engagement building, it gives the audience ownership of the show. Right. They feel like theirs too. Right. And that, I think, is a really powerful way of turning your audience not just into a listener, but into your advocates for your show. So I think that's really solid and good advice. So what would you say now, current landscape of podcasting, what would you say today? Somebody just starting out, somebody thinking about this for their cause. What would be your number one piece of advice? I'm going to coach this by saying other than just get started, because that's always good advice, but we get that a lot.

Speaker 3 (19:51)

Yeah, I mean, obviously you're doing that. Yeah, I think a good thing to do. So I do some podcast consulting. I've recently helped launch a nano rare disease podcast. And so as we were launching, I was like, all right, we really want to make a list of the people in your network that you can reach out to and say, hey, we're launching this podcast. We really want to get five stars on Apple podcasts. And now Spotify, you can also rate on Spotify. You can't review yet, but you can rate and you need to listen to like 30 seconds of the show or something. So I know some people go to rate it and they're like, oh, I can't just listen to a little bit of the show. But I think make your list of your people. And that way when you release your trailer, I would do that like a week before you release the first episode. And I recommend releasing three episodes on that first launch day. That way you've got a lot of content to people to start listening to. I think it helps increase you in the charts and really getting a lot of ratings and reviews at the beginning.

Speaker 3 (20:48)

So I think starting like email marketing is really good. I say that as we're starting email marketing. Which is kind of crazy. I've been kind of just doing old school. Reaching out to people individually or whatever in group lists. But now we're starting to do email marketing and I think it's just so important to come up with that list of people that either could be future guests. Like people that you're like. Hey. I really need your help with this. And let us know if there's anything that we can promote on our podcast as a thank you. So I think that's a good approach as people are launching as part of.

Speaker 2 (21:21)

Everyone'S appearance here on Call spots, we always like to support and promote an organization that is important to them. Today we're talking about the National Organization of Rare Disorders. It's at Raredisas.org. As we were saying before the show, I'm pretty sure that we have talked about Nord in the past, but the connection is obvious. But just tell us in your words, why is Nord important to you and why are they the ones you want to support today?

Speaker 3 (21:44)

Yeah, so Nord is really important to me because, as I said, so many people have rare diseases, one in ten Americans. So they're really supporting so many people. And what's great about Nord is whenever a rare disease comes up for even one of my patients or something, I know I can go right to raredisas.org and then they will have some kind of content that I can use. They're kind of like the directory of rare diseases. So if I go in there, I can find probably an organization that's focused on that specific rare disorder or a group of disorders that includes that one. So I find it just really helpful. It also has great patient information. So if you're a parent caregiver or yourself have just had a diagnosis, I think it's a great place to start learning and also just being able to know where to go from there. So I think it's just such a great resource to learn and to network. I definitely like supporting them when I can. If you happen to be listening to this in February randomly enough, february is Rare disease month, and the last day of February is Rare Disease day.

Speaker 3 (22:49)

I think that's a great thing that you can kind of support and promote rare diseases, raise awareness. It's kind of cool. The rarest day of the year would day or whatever. So when we have February 29, that's where disease day most time ends up being February 28. But that's kind of just a fun fact there. But yeah, Nord is amazing. It's just such a great group of people that work there. And I just also want to thank them for all of their hard work.

Speaker 2 (23:13)

Amazing. So once again, it's raredyseases.org. Or you can just Google national Organization of Rare Disorders. Of course we'll have a link to them, as well as DNA Today and everything else in the show notes of this episode. So one more thing I want to touch on that I thought was super interesting and that I think would be a good place to leave KAWS Potters out there was you mentioned that your school was a sponsor of your show. How did that come about? And not that everybody doing this is in school and could do that, but what lesson can somebody take from the relationship you build there and how they could potentially get that same kind of support from educational, business, nonprofit organization?

Speaker 3 (23:57)

Yeah, I think that's a great question, and I think it's all about relationship building. They were not a sponsor while I was in school, so I should mention that. So once I graduated, then I approached the program leadership and was like, hey, a lot of people listening to my show are prospective students, and I'd really like to send them your way at Sarah Lawrence and just explain that I had a really great experience and everything that I've learned. The networking from Sarah Lawrence. It's the largest genetic counseling program. It's where genetic counseling was invented. There's just all this cool stuff about Sarah Lawrence college. And so it's something that I was like, hey, you're doing these webinars, like an open house webinar kind of thing. And so I'm like, why don't we do an advertisement? Because a lot of people listening are going to be interested, and we'll use a promo code so we can keep track. So promo code for everything for DNA Today is DNA Today, so keep it easy, simple. And so I approached them with that, and the first time we did it, they had over, I think, 100 people sign up from the podcast.

Speaker 3 (25:01)

So they were like, oh, this is fantastic. Let's keep doing this. So I think even if you wanted to offer like, complimentary advertisement or something and say, hey, why don't we see how this goes? And if you like this, then we can do a discount in the future or something and kind of keep that relationship going. I'm quite involved in terms of just being an alumni of the program. I try to attend those open houses, talk about my experience, answer student questions. So I think that's one thing. And we've had over 35 sponsors of the show, so it's been a really cool aspect that now this has become a business for me. I never thought when I was in high school I would make money from this show, but it really is just an added bonus. So I think it's just really good to do relationship building and reach out to people that you've had great experiences with a. Product that you really like, something that hopefully is related to your show. So for the most part, we just advertise things that are genetic related or like, okay, you're listening because you're interested in genetics.

Speaker 3 (25:54)

I want to provide you with this information about this certain product or service program. So I think that's a good way to go about it and definitely have a media kit. I think that's like, you got to have a media kit of just a PDF of information about you, the show, what your sponsorship packages are, how much you charge for an ad, things like that. And if people want to know, I'm happy to send my media kit to people that are listening.

Speaker 2 (26:17)

And of course they can do that. They can find you at DNA Today.com, which you just mentioned. We'll have links to the show, to Nord, to all of your social profiles as well. And truthfully, I don't know if I could have given the advice that you just said what you said any better in terms of building community, building relationships and just sticking with it. It is an amazing thing that you have built here and we are super happy to have been able to share with our audience. Kira Denim, host and creator of DNA Today. Thanks for joining us in Cosmopolitan.

Speaker 3 (26:50)

Thank you so much, Matthew. You got an awesome show. I can't wait to listen.

Speaker 1 (26:53)

More Episodes thanks for listening to this episode of Causepods. If you've been inspired by the work of our guests, please check out the show notes to this episode in your podcasting app. Or@causepods.org there you will find links to their show, their website, their podcast, links on Apple, Google, Spotify, as well as a link to support the charity that.

Speaker 2 (27:13)

They highlighted here in this episode.

Speaker 1 (27:15)

You will also find a causepods.org, a way to subscribe to this show on your favorite podcasting app, how to sign up to be a guest on the show, and a link to our Facebook group which is going to have special resources just for the folks who are podcasting for a good cause. And I can tell you right now.

Speaker 2 (27:32)

We'Ve got one great deal from our friends at Pod page, but you're only going to learn about it and get that special deal if you are a member of the Facebook Group for Causepods.

Speaker 1 (27:40)

And before I go, I should say thank you in particular, this show is edited and produced by Ben Kilowatt of the military veteran Dad's podcast and what.

Speaker 2 (27:48)

A great job he has done.

Speaker 1 (27:49)

And all this is made possible because.

Speaker 2 (27:51)

Of the great support that I receive.

Speaker 1 (27:52)

From Shannon Rojas here@thepodcastconsultant.com. Once again, if you want to learn more, go to Causepodsorg. Thank you so much and we will we'll see you next time on Causepods.