002 – Corporate Partnerships for Awareness with Patrick McCartney of the International Essential Tremor Foundation


Creating awareness for a little-known health condition is challenging—let alone promoting your organization’s existence in that space. Patrick McCartney of the International Essential Tremor Foundation comes on the show to talk about his experience using corporate partnerships to amplify awareness and how he chooses effective marketing channels with limited resources.

Full Transcript

Welcome to Health Nonprofit Digital Marketing, a podcast for nonprofit marketing and communications leaders who are using the Internet to reach and engage people with health issues. I’m your host, Spencer Brooks of Brooks Digital. And today I’m joined by Patrick McCartney. Patrick is the executive director at the International Essential Tremor Foundation, which is a nonprofit that’s dedicated to providing hope to the essential tremor community. So, Patrick, first of all, thanks so much for coming on the show today. Could you just start by giving listeners a brief overview of what essential tremor is And also the work of your foundation?

Yeah, well, first off, thanks for having us. We appreciate the opportunity to share our story. So essential tremor is a neurological condition that often gets confused with Parkinson’s disease. But essential tremor is the most common movement disorder in the world. It’s eight times more prevalent than Parkinson’s. You hear varying numbers, depending on whoever they are of numbers of people with essential tremor. We use the number 10 million in the United States alone, with some varying degree of essential tremor. Some will say 6 to 7 million folks on our medical advisory board believe all those numbers are actually pretty low because there are probably thousands, hundreds of millions who knows people out there who just aren’t even going to a doctor.

So it’s not being reported, so you don’t even know they’re out there. So we, as an organization, were pretty small group staff of three, about $600,000 a year budget. But we focus on four areas for the essential tremor community awareness, education, support and research kind of our four pillars of what we do with the essential tremor community organizations, been around a little over 30 years, started obviously, really small and continue to grow each year is the more people learn about 80 and learn about us and the resources that we have available.

Thanks, Patrick. The first thing that came into my mind as you’re sharing that as well is 10 million. That’s a lot. That’s a lot of people. And so I can imagine, you know, you mentioned awareness as one of the things that you’re doing. It would seem to me that that is probably one of the biggest challenges that you face. I mean, is that is that correct? Is awareness a major issue that you’re dealing with our our other things, more of a more of a challenge?

No, that that that spot on a matter of fact, I had a conversation a couple of weeks ago with the donor who wanted to make a a fairly significant contribution. And it was one when asked that exact question. What’s the biggest challenge your organization faces? And it’s, quite honestly, a real lack of awareness for essential tremor and an even bigger lack of awareness that the International Essential Tremor Foundation exists and the resources we have available. That’s an even bigger, bigger challenge than just the awareness for essential trauma. And you you mentioned. And I saw on your website as well that actually, it’s essential Tremor Awareness Month, uh, March. And so what activities are you focusing on, especially this month to build awareness around essential tremor and your organization, and how have you gotten smarter about that over the years?

So a little history about it, too, So essential Tremor Awareness Month is an actual an actual national day designated by Congress. So my predecessor worked with our former congressman, Dennis Moore, in 2000 and 10 and got March designated by House House Bill is essential Tremor Awareness Month. So a lot of people think we just do. We just make it up, you know, that’s what we do and that’s not true. We have the resolution posted on our wall here in the office. So during that month, obviously, based on the name, we’re focusing on awareness for essential tremor.

We do a lot of different things. We have a dedicated page on our website that people can go to. We have a poster available if they want to order posters to put in their local community center. Doctor’s office library. We have social media banners that you can post and use as your banner for your social media channels. When now, in the new day and age, we even have a zoom background that you can use with our monthly slogan for this year, which is Let’s talk about E. T. You download that virtual background and have it on the background.

You zoom calls because that’s what everybody’s doing. Another thing we do marches a large fundraising month for us. It’s we do three of fundraising appeals a year, Uh, and this is one of them So we mail out a fundraising appeal to our community a little different than our other appeals in that with these, we all always offer a small promotional item with donations. So for this year, for instance, for a $30 donation, you can get an E T water bottle that has a built in straw with it.

Which makes it much easier for folks who shake has our let’s talk about et logo on the water bottle. And for $50 donation, you get the water bottle and a tote bag that also has the logo on it. In the past, we’ve always done T shirts, and we wanted to try something different this year, and you’re talking about kind of what have you learned or what do you what were potentially there? And you know, one of the mistakes. I think as market as we’ve all made in the past, as we think something is a great idea.

But we don’t really test it with our audience, and we just do it and then it fails and you wonder why? And so we kind of made it’s not. Once we made that mistake, we we did that with these water bottles. We had done the T shirts for years, and people love them. But from a logistical standpoint, it’s a nightmare. Oh, I want an excel, but I only have a large so on and so forth, so this makes it much simpler for us. What we’re curious to find out is what is the response to the water bottles do?

Let’s do people say I don’t want a water bottle. I want a T shirt. We just got the process started, so we don’t really know yet, But it’s going to be fascinating to find out. Another thing that we’ve learned is because of the size of our organization. Partnerships are really important. So we have a lot of corporate partners. There’s a many more just in the five years that I’ve been here, pharma companies and medical device companies that are now getting into the market that are partnering with us and we work with them to help spread the word about essential tremor and essential tremor awareness month.

Obviously the abbots of the world, the medtronic of the world, all those other farms, they have much bigger reach than the I T. F does so them sharing our social media post promoting our website during this month and all the tools we have available is huge, and I’ll give you one specific example. One of our one of our newest partners has offered to purchase for us a half page ad in USA Today, which is a national run, which we could never afford. So those are the kind of things we’ve learned and built on him over the years of of those partnerships to help us raise awareness.

And I do want to actually dive a little bit deeper on that because there’s there’s a lot of things that is really curious about what you just shared. But I think with the partnership angle, it seems like it’s almost the golden standard there right where you can be doing a lot of different activities, and some of them, like the personal touches with water bottles and things like that. It’s a very tangible gift in exchange for giving money, which sometimes isn’t a very tangible action. So when it comes to those partnerships, um, could you talk a little bit about how that evolved and how you went about reaching out or developing those relationships.

Yeah, a lot of those relationships. A couple of them were in place before I even got here because quite honestly, at the time, there just wasn’t a whole lot going on in the market. There was one company focusing on what’s called deep brain stimulation surgery. They’re about the only game in town. There were no pharma companies working on E. T specific medications. A lot of them have now seen the value of those 10 million potential customers that are out there and are now working on different. Either devices the system devices, wearable devices or medications and things of that nature.

And so, quite honestly, a lot of them approach us because they know we have the most targeted essential tremor list in the world. If you want to reach the E T community, you go through us. Or what will happen is if I see something, we get a good We get Google alerts every week, just like most companies do. About essential tremor is the tag, and so you’ll see an announcement of a company that’s starting a trial or working on a device whatever, and I’ll try to reach out to them saying, Hey, we would love to help you You know what?

Whatever that helped looks like, whether it be recruiting for a clinical trial, writing an article in a magazine about your new device because our community has starred for new information and new treatment options. And then anything we set up, we obviously wanted to be a win win for both parties were not just going to take their money. And then that’s about it. So we try to set it up to where it’s it’s a win win for for everybody, and they’re they’re getting, you know, contacts with potential customers. And we’re obviously getting support financially from them to allow us to do things like the USA Today that we could never do on our own.

I thought it was interesting how you mentioned the idea that I mean, you’re the gateway to the community in a way, and I would imagine that and you can let me know whether you know that you feel it’s right or wrong. But that’s almost like a flywheel, in a sense, where you you have a list of people who you’re helping and then that generates interest from potential partnerships which give you more awareness which make your list more compelling and kind of like this flywheel that gets going more and more. Do you feel like that’s the case?

Yeah, it’s all cyclical. Obviously, we feel like we’ve done a much better job over the years, especially with our social media outlets now a great being able to raise awareness because there’s more tools and avenues way to do it than you used to be able to just mailers type things. For example, you know, we have an email list that’s over 22,000 people.

We have an online support group page through Facebook That’s a closed group for ET patients and family members and caregivers that has doubled in size in the five years since I’ve been here. It’s over 11,000 people on that page. So yeah, and then in the basis of anything we do has to be awareness we have to first off make them aware of the central tremor and the I t f. Before we can educate them about it and then, quite honestly, before we can try to cultivate them, which is our ultimate goal to the donors to our organization and let us continue to do the things we do.

You mentioned a lot of various resources, like support groups, like email list, things like that. And you mentioned your three person organization here. You don’t have an army of staff and even, you know, checking out your website. There’s a lot. There’s a lot there. I saw podcasts, events, publications, yeah, the newsletter support groups, as I mentioned. So how do you juggle all of those responsibilities and producing all of that and managing it with just three people?

Well, first off, we have an awesome staff, our marketing manager and our database slash volunteer manager all that they just do great work, and I trust them to do their job, and they’re good at what they do, which is a is a great asset for us.And so that’s a huge help, and we just have to be very strategic and the things that we do, I don’t know if you’re a baseball fan, but for those of you out there that are baseball fans, we like to liken ourselves because we’re the Royals were a real small market team. The Parkinson’s foundations of the world. The large organizations are the Yankees. They can spend money and make mistakes. Try things and it won’t, you know, kill their budget. We have to be very strategic and what we do, and very very sure that it’s going to work before we will spend the money on it.

You know, we would never do friend back to that USA Today. We would never do that because that’s just so much money for us with no very hard to measure. Return on something like that, and then we because of our limited resources, you know, we focus most of our effort on the patient. We don’t We don’t have the ability and the resources again to target patients and doctors. So we try to focus most of our effort on the patients with the hope that they will then be advocates to their doctors about us.

We do target doctors, but mainly through in person conferences. So, for instance, I will attend each year, not the last year, obviously or even this year because of what’s going on. But we go to the American Academy of Neurology show. We go to the American Academy of family physicians show we go to a group called the Movement Disorder Society. Uh, so that’s where I mean doctors in the world. And and the main focus of that is, quite honestly, just to raise awareness. And I’ll give you an example when I go to the American Academy of Family Physicians.

That’s your general family doctor, general practitioner. And that’s who most people go to first line with anything I have. So if they noticed a tremor in their hand, that’s the first person they’re going to go to to get it diagnosed. I’ve been to that show for five years now, talked with hundreds of doctors While I’ve been there. Every one of them knows what essential tremor is. Not one doctor in five years that ever heard of our organization. Wow, that’s a pretty shocking actually. And there’s two things that I wanted to pull out of what you said.

Actually, the first is I totally agree with. I think what I heard you saying earlier is you’re primarily focused on the patient’s. Maybe not exclusively. Obviously, as you mentioned, you’re talking with doctors as well, but I love that idea of focus, you know, in, at least in my world like I see in Digital analytics, for example, right, the same idea kind of applying where you have so many different options of things that you could be doing and so many options of things that you could be tracking.

And as an organization with not a lot of resources, you don’t have the luxury of trying to do all of that, especially when it’s probably going to. All of those things are going to be done rather poorly. I would imagine so. I love the idea of of sensibly focusing on something that really matters, because then you can actually direct your time and resources to a place that is going to allow you to do that. Well, so I love that. And I did want to go back to what you said about as a small organization, evaluating opportunities, knowing that you don’t necessarily have the ability to just try and fail at a bunch of things.

So what advice do you have to listeners who might be in that same position trying to evaluate these different things that they could be doing without reducing their risk? I guess of failing well I think the key for us and the keeper anyways would make sure you have that. You know, your target audience is what you’re reaching out to. Uh, the shotgun approach for smaller organization is not going to work. Uh, and I’ll give you a real a real world example of something we did the with essential tremor.

The perception is that it’s an older person’s disorder disease, and it’s not. It affects all ages but the majority of the people that are engaged with the organization and are doing something about it. Our older 65 plus because it’s a progressive disease and it’s gotten worse. So we we did a campaign down. This was, I think, now, two years ago in the Villages, which is the largest senior living community in Florida. And we did it. They have their own in house, basically ad agency that has newspaper magazine Digital, print all that time stuff and put together a 60 day campaign with them, uh, with a newspaper ads, newspaper inserts, uh, and those type things and reached, you know, probably 100,000 people.

Plus, I don’t remember the exact number of top of my head that campaign generated over 500 new contacts for our database, which is huge for us and and several new donors without knowing the number of top of my head. I don’t know. I’m sure the other thing we did we have a magazine I think you saw on the website called Tremor Talking. That’s our donor only publication, and for as large as an organization as we are, we don’t have as many donors as we obviously would like, which is the case for every non profit.

So we did last year a special edition of the magazine that when we pulled the list from our database of folks that have been engaged with the i t f. But it never donated and sent them the magazine saying, Hey, here’s what Here’s something you will receive for your donation that any donation it doesn’t it can be $1. It could be 1000 and you’ll get this magazine three times a year, generated about 140 new donors and about 4 to $5000 in new donations, which doesn’t sound like a lot, but for an organization like us, it’s a lot.

And then the key obviously there is in retaining those people. Yeah, that’s fascinating. Um, thank you for sharing that as well. I did want to switch gears a little bit here, as I’ve got a number of questions I’d I’d love to ask you. And I think one of the things is you mentioned. I think right now, awareness being a challenge, as as you mentioned earlier. And what’s what’s one thing about that in that awareness space right now, that’s that’s really consuming a lot of your brain space right now.

And what takeaways could you share with listeners who might be struggling with that same challenge? You know, for for us, it’s what is again, what’s the most targeted best channel to try to reach our target and being targeted with now again, the luckily with social media obviously not not any cost involved in a lot of that stuff. One of the things we’ve tried to do, and this isn’t unique to us. This is a nonprofit in general. You always hear the way you’ve got to reach the younger audience.

How do you reach the younger audience? I was at a conference where the speaker is like, you know, the younger audience is the unicorn of the world. They don’t exist. I mean, they’re out there, but they’re not gonna probably be engaged with the organization because they’re just out in the real world, their discretionary income is low. If it’s a disease, has progressed enough. But what we’re trying to do and it’s our marketing manager spends a lot of time on. This is our social media with the hope we use in the twitters of the world, the instagrams of the world, um, to reach those folks at least to get the word out.

So they’re aware that we’re here when they’re essential tremor progressive, bad enough that they want to do something about it and learn more about it. They know where to go there, not probably reaching out to us right now. The older generation, they’re still using Facebook, and we have a huge success with Facebook. They do a lot of things for us, so those are the kind of those ways. And with this pandemic now, we’ve spent a lot of time and something we should have been doing before and quite honestly again, you just get caught up in the weeds every day when there’s only three of you.

We weren’t doing podcasts, and we weren’t doing this virtual stuff, but our hand was forced because we had to start canceling our in person education. Events that we’re doing around the world are not the world, the United States. And so we started doing these videos. Webinars. We post on our YouTube page, and the podcast series started those last September. We’ve posted seven webinars that have had over 15,000 views between them and our podcast series, same number of seven on different topics that has been downloaded over 2100 times, which again, we didn’t have a number in our mind.

But that seems pretty good on our end. We’re very pleased. Yeah, I love the comment you made earlier to about it. It’s not necessarily about reaching the younger audience. It’s your audience, all right, I think, as you kind of alluded to different audiences are on different channels and, for example, you know there’s another organization, um, that we work with in the diabetes space. And you know, the thing about diabetes is that well, it can affect people that are younger. It also predominantly affects people who are a lot older.

But for whatever reason, you know the representation of that population. You might see more younger people than and older people may not be as either vocal or maybe engaged on social media and a vocal way. Now. That’s not always the case, but it kind of highlighted to me, the the younger audience. Yes, it may, you know, that might be the Holy Grail, but it just as you mentioned, really matters who your audience is. Yeah, and you’re talking about again your audience. When I first arrived here, we print the magazine.

I mentioned the Tremor Talk magazine for color 32 page magazine, great great piece that our marketing manager put together three times a year. When I first got it. I’m like, Who in the world What organization still prints of four colored 32 page magazine? That’s ridiculous. What a waste of money. I’ll tell you, I was unequivocally incorrect on that. Our folks love that magazine. It gets passed around multiple times. People leave it in the doctor’s office. They share it with their friends. They would have hung me if I would have eliminated that publication, because again because of an older demographic that we really are more engaged with us.

They’re still very print, wants something in their hand Brochure, Flyer magazine to get their information. Yeah, that’s a That’s a good insight. I did an interview with someone actually a couple of days ago, Um, and they made a comment about not not being precious about your creative, which was kind of a way of saying like, You don’t know what’s going to work And so I think that’s such a great example, because you know that even if you or I look at something like that and say it’s so outdated, it kind of it doesn’t matter if it just gets the results.

So I think that’s a That’s a That’s right. It’s a good nugget of wisdom there. I got time for one more question here. I wanted to ask you what two or three resources would you recommend? A. Listeners who want to keep up on news and trends and nonprofit marketing. I don’t know what it’s like in other towns, so we’re based in the Kansas City area, and we have a local group called Nonprofit Connect, which is an umbrella organization for all the non profit associations in the town that we are a member of, and they hold.

They have all kinds of resources for nonprofits, particularly smaller ones who again have smaller staffs and don’t can’t do these kind of things themselves. And they do a lot of speaker series on varying topics, marketing being one of them. I would highly encourage any organization if they if there’s there’s something like that in your town, become a member of that organization and and and be involved in it and learn from the experts that they bring in to talk about those topics. There’s no such thing as a new idea.

So you’re amazing what you can learn that those things are like, Well, wait a minute, why aren’t we doing that now? The other thing along with that is, and you can do this that those kind of organizations to are just from networking best practices from other other similar organizations, you know, talk with other groups that have similar missions that you do maybe or have similar causes that you’re working on. A lot of times we run into that silo effect. Well, this is my thing, this is. I’m not playing nice with this folk over these folks over here to do the same thing I do because they’re the competitors now.

Sometimes it’s true. Sometimes it’s not. But, you know, you can learn a lot from what other people do. And again I would you know, networking and just commiserating with other folks that do the same thing you do and learning what works and what doesn’t, uh, is great, because again, it’s a It’s a tough business and it’s tough to do. And, you know, we we were really worried when this whole pandemic and this whole thing now gone on much longer than anyone expected us included. We were really afraid, like every nonprofit was.

How is this going to affect us and probably in a negative effect? I’ll be honest with you. We’ve had a banner year. We’ve had a huge the biggest fundraising year we’ve ever had. We received the largest one time donation that we’ve ever received as an organization. During this time, our numbers skin for these virtual events and typically in our education events, and we do them in person. We reach 100 to 150 people might attend these events. We’re getting thousands of people to see the same thing virtually through either our podcast or webinar series.

So even when we go back to doing our own personal events, which we will, because we would still like that human obviously touch in contact, we’re going to continue these virtual things because it just reaches so many more. Well, it’s really encouraging to hear, actually, and thank you for sharing that with listeners as well. Probably feel a little bit in the same same boat. I’m sure. Um well, to wrap up, Can you tell listeners how to get in touch with you if they’d like to learn more about your work?

Yeah. So if you want to get in touch with us, the our website is essentialtremor.org tons of information on the website. Like you said, Actually, you would have been amazing. Just that’s are we just that is a newer Web site redesigned in April. Before there was even more information on it. We had to get rid of some of it because it was just too much. We’re all in all the social media channels, if you just do a search on Twitter for essential tremor Facebook.

You’ll find us.  And then if you ever if you just want to call us toll free numbers. 888-387-3667 and we’d love to talk to you. Do you have any questions about essential tremor? Um, you know, kind of back to the that loved one time large donation that we received. Uh huh. The marketing agency that we work with. One thing that we do Do we also contract with the local marketing agency to help us look at bigger picture stuff? Because again, we get so caught up in the day to day, we’d stuff there.

There are big picture people. But when we received that donation, I looked the gentleman up in our database. He had been on our database 13 years. He had donated twice for a total of $73. So what it teaches you is it’s important to cultivate all people as potential donors did. You just never know unreal. And he wrote us a check for $2 million.

That’s an incredible story. And yeah, and thank you for sharing that as well Patrick. I’ll make sure and put the information that you just outlined in the show notes as well, so that listeners can can go and grab that. Great.

We appreciate it. Yeah, well, that wraps up our show today. But thank you again for for sharing your wisdom, Patrick, and being on the show.

No problem. Appreciate the opportunity to share our story.

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