This is a transcript from the Launch Yourself Today Podcast coaching conversation with Elijah Stacy, a 17 year old who has been diagnosed with Duchenne Muscular Dystrophy. He is in the International Baccalaureate program at his high school, and he earned a 4.6 GPA last year. He is also on the Mock Trial team and has a deep interest in Law. Elijah started a non-profit organization, called Destroy Duchenne, to end suffering by curing deadly diseases such as Duchenne.
Elijah, thank you so much for taking time to hangout. I want to hear more about what you are doing and maybe see how we can help you out today.
Thank you for having me on the show.
Tell me about yourself. Tell me what you are looking to do. What you are doing in life and maybe tell me about how you’ve been feeling a little stuck.
I have a muscle wasting disease called Duchenne Muscular Dystrophy. My little brother also has this disease and my other little brother, Max also had this disease but he just passed away on January 3rd. I’m on a mission to cure this disease, so I started a 501(c)(3) non-profit organization in the summer of 2017.
You just gave me a lot of information here, this is pretty intense. You have a disease called Duchenne’s Muscular Dystrophy. Is that right?
Yeah, that’s correct.
And you have two brothers that also have this disease?
Yes, that’s correct.
And one of them literally just passed away this month?
Yeah, January 3rd.
I am so sorry, man. How old was he?
He was 14.
Fourteen, okay. I can’t even imagine. So, this is a hereditary disease then, I’m assuming?
It’s actually not hereditary. It is a genetic disease, but it’s not hereditary.
So, it’s just circumstances that you guys all had it?
The way it works is the mother actually carries the gene but she doesn’t actually have the disease herself and then she passes it onto her offspring.
And were you each diagnosed at birth? Or was it diagnosed later on?
Well, we were going somewhere and my mom wanted me to ride in the front seat with her or in a different seat, I was about 7. She told me to go up to the wall and, “We are going to do a measurement. We are going to see how tall you are.” So, she said, “Elijah, put your heels down.” I couldn’t do that and she’s like, “Stop messing around.” I’m like, “I’m not messing around.” That’s when she first noticed that this kid is walking on his toes, that’s abnormal.
So, a common side-effect of Duchenne’s is kids will start to walk on their toes because their muscles are getting weaker and they are compensating. We didn’t know about it at birth but about the age of 7 it started to become a thing that we looked for.
So, in 2017 you started a non-profit, it’s called Destroy Duchenne, is that correct?
That is correct.
And obviously the goal is to seek a cure and have people’s health restored. How have you been going about that since you started the non-profit?
Duchenne’s is not a really well-known disease. So, something that we really believe in as an organization is the power of the internet. Social media is something that is a really, really big part of our strategy. I’ve just been trying to get the word out and get some exposure and really educate the public about what Duchenne’s is. The other thing I want the public to know is how realistic the cure is. We know what can cure this disease, it’s just a matter of raising the funds and raising the awareness to make that happen.
When you say you know what could cure the disease, help us understand more about that. Because I’ve heard of Muscular Dystrophy, but I’ve never of Duchenne’s until I heard about you. I just appreciate you educating me.
When I say we know what the cure is, there is this technology that was discovered in 2012, I think. It’s called CRISPRCas9. Basically, it’s a gene editing technology that is strong enough to make precise edits in a person’s DNA. It’s kind of just like Microsoft Word or editing a text document. Your DNA is a bunch of codes, so with this technology it allows us to make precise edits or add things in. This could solve a lot of genetic diseases but it’s a matter of just testing it, specifically with Duchenne. And then making it a reality. There are still a lot of things that we have to overcome, such as legislation and ethics.
So, you started this organization and what are some of the things besides – I know you’ve been providing some education via social media online – what are some other ways that you’ve been getting the word out?
We hosted our first fundraiser which we called it the Bowling Battle on October 14th last year. We sold the place out, about 250 people were there. So, it was a really, really good turnout. A sellout, it’s the best turnout you can get I guess, right? We just like to have fun with our fundraisers, they are fun-raisers. So that’s what we did, things like that. Once and awhile I’ll go and give public speeches about the disease. That’s kind of what we’ve been up to; fundraisers, speeches and social media.
You are going to school, is that correct?
That is correct.
What grade are you in?
I’m a junior.
So, for those who can’t see you, you are utilizing a wheelchair now. Is that fulltime?
And just so people understand, feel free to share to level that you feel comfortable with, I don’t want to ask anything inappropriate – but just so people understand how this disease is affecting you personally on a day to day basis, would you be willing to share any of that at all?
Sure, I’ll kind of go down the whole timeline of what this disease does. When you are about 7 and 8, it starts to get harder to walk. You get more fatigued walking. You start walking on your toes. You are walking slower. A lot of people look at your different. They question you, little kids especially. You can’t keep up with everybody. You can’t play on the monkey bars and do all the stuff that little kids do. It’s kind of robs a kid’s childhood.
Then at about 11, that’s when I lost my ability to walk. It’s more than just not being able to walk, going to the bathroom will be harder. Getting into a bed. Transferring to different things; getting into a car. Those are things that really, really suck. Then as time goes on, it eventually goes after someone’s arms. As a 17-year-old, a lot of kids are driving and stuff, but that’s definitely going to be way more challenging for me because I’m going to need a specialized car which is a tremendous amount of money.
It really does steal a lot of the things that people or kids enjoy about their childhood. Losing mobility in my arms is the newest problem that I face. It’s really frustrating because not walking is one thing, but not being able to use your arms to do simple things like drinking water or scratching your head, sometimes you just want to scratch your head and you can’t do that.
DAVID (0:08:02.1): Do you have difficulty with your arms right now?
Yes, that’s the new problem. It’s really sad, in 6th grade I taught myself how to play basketball and shoot, I was actually pretty good at it. I would play every single recess with my friends. It was something that made me feel important and something I looked forward to. I can’t do that anymore. So, it’s just stuff like that, but on a personal level. I think the disease attacks people in different ways.
And your brother’s passing? You are obviously older than he was, were there specific challenges that he had health wise?
My brother Max, he had Duchenne’s but he also had other problems. When he was first born, he had open heart surgery. The surgery was a normal thing that they do on a lot of babies but since he had Duchenne’s, going under surgery didn’t go well. I think he had a stroke or brain damage, it caused lots of problems. He could never talk. He eventually had to have a feeding tube. He couldn’t lift his head up. He was basically stuck to a bed for the majority of his life.
That’s a lot of challenges, wow. You have been through so much, bro. Even the name of your website, Destroy Duchenne – “This thing will not destroy me, I’m going to destroy it.” I just love your passion.
I’ve actually said a quote like that before, “I’ll either cure this disease or it will kill me.” That’s how it’s going to go, I’m going to fight till the death.
Now before we get into how I might be able to help you in some ways, often when someone has a diagnosis, it seems like that diagnosis can become an identity. I don’t want people to think of you in that way.
Tell us about you. Outside of this diagnosis that you have, what’s life all about for Elijah? What do you enjoy doing? What are you passionate about? What do you like in life?
One of my biggest passions is business. I love business. Truly, that’s one of my passions. I also love to read. I’m always following the news. I like to do normal teenager things too. I like hanging out with my friends and going to the movies. I guess, being around people, that’s what makes me happy. I’m a very social person, so being around people is something I enjoy a lot. I like sports. I’m a big football fan and a big basketball fan.
Who are some of your favorite teams?
Basketball is LA Clippers, 100%. But I’m a big, big LeBron fan. I really like LeBron. I like that he’s in LA. I wish he was a Clipper, but I’ll take it. And then NFL, I don’t really have a team but I’m supporting the Rams because they are also LA. I’ve got to support the local teams.
That’s great, any recent books that you’d recommend?
Right now, I’m reading a book called Can’t Hurt Me. It’s about a Navy Seal who shares his whole childhood and stuff. It’s really inspiring and he’s got a lot of good points. It’s just fascinating to see these warriors and the way they think. That’s what I’m currently reading.
Great! Let’s get down to how I can help you. You are thinking about your non-profit. I, myself have started a number of non-profits and grown businesses. I’ve helped people in terms of thinking through their strategy and branding and vision and goals. Where are you feeling stuck? Where can I help you think through some things today?
The thing I’m trying to accomplish this year is to make this disease go mainstream. The part that I feel stuck on is connecting with people. Getting these connections. I wish I could get in touch with celebrities or entrepreneurs or people that have more experience or more of a platform to help. I really believe that if they knew about my story and what I’m doing they would want to help. It’s just getting the word out there and getting connected to these people. That’s one thing that I personally am struggling with – connecting with people.
Alright, so what I’m hearing you say is, if I can get the people’s awareness raised about this disease, then we could raise more money in order to do more funding for the cure. That’s a big issue – awareness.
As I mentioned, I had not heard of Duchenne’s. Muscular Dystrophy, I don’t know much about it. Is it MDA? The Muscular Dystrophy Association? I assume they play some sort of role in creating awareness for this aspect of the disease, is that correct? Or is that not correct?
I don’t know too much about the MDA. I’m pretty sure they probably raise awareness for it but I don’t know too much about what they specifically do in regards to Duchenne.
Who is the biggest Duchenne organization or who is creating the most awareness of the disease? Do you know who might be the biggest one?
I’m not so much sure about awareness, it’s something that I feel that as a community we could do better. I kind of feel that we are doing a lot when it comes to awareness, but an organization that I know and talk to, they are doing a lot towards science is Cure Duchenne.
What’s that URL? I’m going to look it up right now.
“Accelerating the cure. Redefining the cure. Building community.” Alright, so this is an organization that is working on that. You are connected to them in some way?
I know them and they know me and we talk. We have the same goal.
So, you want to raise awareness and you want to get to celebrities in order to share that story, right?
How have you tried to do that up until this point?
I have a new tactic that I’m doing right now, but I’ve been emailing and reaching out through social media. I haven’t tried a bunch of celebrities yet, I’m going to try a lot more this year and see who wants to help. We’ve tried with Ellen, tons of people wrote to her and contacted her through social media and tagged her in a bunch of posts.
On your behalf?
Yeah, we haven’t heard back from her yet, so I’m not sure. She’s obviously a very, very powerful person and tons of people are probably messaging her. So, getting to her or just being seen is the biggest hurdle that I have to overcome.
Okay, so I’ve got some ideas for you. You ready?
One of the things that I know about people, whether they are celebrities or they are experts and they have a lot of people coming to them – whether its non-profits or otherwise, is that there has got to be a clear ask. So, if you are just reaching out to them and saying, “Hey, I want to introduce myself. I want you to help us make this more aware to people.” It can feel a little overwhelming.
So that’s the first thing that I would encourage you to think about; “What am I asking them to do, specifically?” So, if you think about that for a moment, whether its Ellen or LeBron — If LeBron was hanging out with you right now, what would you ask for him to do?
Yeah, that’s easy. I have actually thought about this. I want to create a custom sleeve that says, “Destroy Duchenne” on it. There are probably a bunch of regulations but I’d see if he could wear it during one of his games or at least during warmups. Everyone would see it an ask, “What is he wearing?” They would see it and it would bring a lot of awareness to Duchenne. It would be memorable and it’s not just a one-time thing. So, I’d ask him to wear a shooting sleeve.
A shooting sleeve for LeBron, that would be awesome. One of the things that you could do is actually create the shooting sleeve and send it to him. It probably wouldn’t cost that much, maybe $20, $50 bucks.
I actually have them already created.
You already have it?
Yeah, we already have it. My question to you then is, where do you send it? Where do you find legit addresses?
I would reach out to the Lakers. I would send an email. You could go online and find their PR person. First though, I would reach out to some friends and family and ask, “Do any of you work in the LA Lakers organization? Do you have any contacts there?” If the answer is “No”, then I would go through the email route.
Contact their PR and send a picture of yourself wearing the Duchenne sleeve – “Destroy Duchenne”. Let them know that you would love to be able to gift one of these to each member of the team, especially LeBron. How much do they cost by the way?
I think we got twenty of them for under $100.
That’s great. So, you’ve got them. Now, they have got to look cool too. I don’t know what they look like, but they’ve got to look cool. I’m sure they look cool. You are cool, they are cool, it’s all good. So, I would then offer to deliver them and tell your story. Tell your story and tell them what you are trying to do.
That would be the first thing that I would do. I would reach out to them that way. If they didn’t respond within a week, I’d follow up with them. If they don’t respond again, I would make a short video where you are specifically tagging the Lakers and LeBron and some of the other top players. I would post that on Instagram and Twitter. That would be the next thing that I would do.
So, I like what you are thinking. You have a specific strategy for how you are going to get to that specific person. I believe they could wear that before the game. They could at least wear it to practice and get some shots in. They could have you show up to the game and deliver it to the locker room or at least have you show up at practice if they don’t want to have you at the game. Whatever it is, I would offer that. That’s a very clear. That’s a very clear ask. How would you feel about finding an email and then sending an email with a photo of you wearing the sleeve?
100%, I’d do it.
You can make that happen?
And if they don’t follow up within a week, I would shoot them another email. You may even be barking up the wrong tree if you just send it to a random email. The Lakers have got to have a phone number to the front office. Call them and ask, “Who is the person that I would need to speak with if I wanted to provide a gift to each member of the team? My name is Elijah. I have this diagnosis and I’d love for them to just be aware of it.”
If you don’t have a connection through the backdoor, you kind of have to go through that front door. That’s just the reality. If you have a backdoor connection, all the better. That’s why I would ask for that first. But then I would go through the front door.
They probably have a lot of people contacting them, so don’t get discouraged if they say, “No, we don’t do that.” You have instant access to them on Instagram and Twitter, they will see it without a doubt. So, if that’s the case, your video has to have good lighting. I would make sure you are smiling and that they are seeing you – I know it sounds a little weird or crass, but they have to see you in your chair so they know how this has impacted you. I’d even be wearing a Lakers shirt — I know that might cause you pain as a Clippers fan.
Except for LeBron, it’s okay.
Do you have a Lakers shirt?
I don’t think so.
I’d probably grab one, that would probably be good for the photo. If you are shooting a photo today to the PR person, I wouldn’t worry about that, but if I was going to do it on Instagram or something, I’d probably get a Lakers shirt.
So that is strategy for the Lakers and LeBron. That’s a very clear ask, great job. So, let’s go with some other – let’s just say you are going to approach some other individuals, is there somebody other than Ellen? Ellen is a big one, that’s pretty huge.
Yeah, so I’m interested – you say, if I post it, they’ll see it but when it comes to Ellen, we did the same thing. Not only did we do it, we did 8 videos in a row. Teachers basically endorsing me, just building up that credibility. My principal made a video to her also. Not only did we do that, we went to her comments section and commented “# Destroy Duchenne”. We did a lot of things and obviously Ellen might not see it, but no staff members have reached out to us.
That doesn’t mean they didn’t see it, they have tons of people doing that kind of stuff. They are busy and they have tons of people asking them for time, money and access. She’s just so big. Once again, I wouldn’t be discouraged by that. I like that there was a specific approach.
Another approach would be to put together a PSA – a public service announcement about this. Are you familiar with what that is?
You could approach Ellen to play a role in a PSA. This is a specific ask. Celebrities are more willing to do things when there is a specific ask that other celebrities are participating in also.
Let’s just say that you could probably spend a few thousand dollars — you may even get it for free if people would donate their time. I’d have a professional video crew ready to shoot a PSA where they would be willing to go that celebrity. A lot of celebrities have access to video staff already, or they could even do it on their phone. This day in age, a phone video is acceptable. You could stitch them all together and edit them together to do a PSA. You would need a pre-written script. You would have to write the script ahead of time and maybe you would select five celebrities or six or even eight. Whatever that number would be, every celebrity would have one line.
You could contact Ellen, but for this I wouldn’t go through social media. I would try to go straight to their front office, “Our organization is developing a PSA in order to raise awareness of this disease, we would be honored if Ellen would read one line on a cellphone video or we would be willing to send a crew to capture via professional crew if she would prefer that.”
So now you are going to specific celebrities and you are asking them all for one line. They know how to do that. They know how to deliver that line. Now all of a sudden, you’ve got a video of six to ten celebrities saying those sentences. “Bam!” it’s all over social media and you’ve got their endorsement. It’s an easy way because it’s a simple ask. What are your thoughts on that?
I think it sounds great, it’s just I worry about whether or not they are they going to see it? Are they even going to see the request? That’s the part that I’m struggling with the most. They probably get 500 emails a day or more. How are they going to see mine? How do you get them to just at least read it?
You can’t limit yourself just a few celebrities. When you are talking about LeBron and Ellen, you are talking about the top of the top. What would it look like to approach some celebrities that are on television shows or Netflix movies? Or they are maybe not the top dog on the Lakers, but they are a support player? Maybe they are a starter but they are not LeBron obviously? Widening your net and making a list of those individuals, that might be more successful effort.
I think that when you are approaching them as a non-profit and you’re a student, that’s a pretty compelling request. Once again, it gets back to specific request. So that’s just an idea. I love your LeBron request. I think a web-based PSA, where you already have it written, so that you are not approaching them empty handed. Show them the entire script but tell them there are four sentences available. Let’s say you have 10 sentences in this PSA, you don’t have anybody to read the ten yet, but if I’m going to send that to someone, I’m going to say, “Here are the four that are available.” That means they are assuming that the other 6 are taken. They aren’t yet, but you are limiting their choice so they feel like it’s a bit of a scarcity mentality. And then another celebrity you are sending them another four.
You are sending them the entire script, so they can read it and believe that they can get behind it. They are also going to check out your website and say, “Is this a website that I can believe in? Is this a disease? Is this legitimate?” So, an online PSA is another idea, another specific request because they don’t know what to say. They don’t want to look stupid. They don’t want to make up something on the fly themselves. You’ve got to provide it to them.
I think statistics would be helpful also. Your website is www.destroyduchenne.org, but if I go to “What’s Duchenne” and “Learn More”, I’ve got some good information here but I don’t necessarily see any statistics. That might be helpful for celebrities. The number or percentage of people who are diagnosed with this. Life expectancy. All of those issues, that might be helpful.
My new strategy right now is handwritten letters, because everyone emails, boom, done. But a handwritten letter, that really sticks out. It’s personal and it shows that you took your time.
What are you asking them for? What are you asking them for in the letter?
Basically, I tell my story. For each person it would be specific. For example, I’m writing to Selena Gomez, she once started in a movie on Netflix where she plays the role of dating a guy who has Duchenne. That’s the first time I had ever seen Duchenne go mainstream. So, I was thinking, “Yo, this is a perfect story. I’m going to ask her to take a picture with me and post it on her Instagram and shout me out somewhere.” Because then the story would be, “Yeah, she made a movie about dating a guy with Duchenne, but now she is helping out a person in reality that actually has Duchenne.” I think it would be a really unique story and it would go really far. So, for each person its different, but that would be Selena. I wrote the letter and I explained that.
Have you sent that letter yet?
I haven’t sent it, I’m still looking for addresses.
Okay, so here’s the way to find her address, are you familiar with IMDb?
Yes, I have that. I found the manager and the publicist and her talent manager of personal appearance. I have those three addresses.
Okay, so you are set then, right?
Yeah, I just have to write another letter now to each of those people.
But you can write it to her and send it to them, just a cover letter or something, right?
I see what you are saying, yeah.
Like, “Hey, I’m sending this to Selena…” Another approach is you sending them an email and saying, “I’m sending you a letter for Selena, here is -,” and you give them a little bit of a heads up in the email about what it’s about. This way they know you are not a stalker or something, right?
I would send a picture of myself in that letter – in the physical handwritten letter, but you could email them ahead of time that you are sending it.
That’s smart. That’s definitely smart. I was planning on emailing them too. I basically want to do everything. Everything.
So, IMDb Pro – it’s a monthly fee of $20 or an annual fee of $150 but you can access all of these actor’s and actress’s PR people and managers. That’s a great way to reach out to them. But once again I would make sure to be asking for a specific ask from her. I think if you have an event, that’s one way to get them to try to come to something. Does she have any concerts coming up?
Not that I know of. I’m not quite sure, she probably does.
Okay, we are going to look at that right now. We are making it happen. So, I’m looking at her – man, she has got some shorty shorts here on her official merch page, Elijah.
Okay, so “Sign up for tour dates” – I don’t see any tour dates here. So here is the idea and this is a different approach then the handwritten letter. This could be the approach for not just Selena Gomez, but anybody – reach out to them and say, “Here is a little bit about me. I’m a big fan of so and so and I’m going to be at this concert or event and I would love the opportunity to meet them, give them something, take a picture, help them be aware of my disease. We are trying to raise awareness.”
So, you look for where the star is going to be and then you contact their management and say, “I’m going to be there, is there a possibility that I could meet them backstage?” Right? So, then they say, “Yes,” that’s when you buy your ticket. Or maybe they will give you a free ticket. You don’t have to say you’ve already bought the ticket. You tell them you are planning on being there. If they don’t respond, maybe you decide not to go.
But your plan is to be there. That’s a strategy that you can use in order to connect with individuals. I’m not trying to encourage you to lie, it’s just a matter of going, “I’d like to be there. I’m planning on being there.”
It would be true. I would plan on being there if I’m going to meet them.
I like all this stuff, I guess its just kind of chance, but the biggest problem is them actually seeing the email. Them actually reading the letter. Them picking it up and taking the time to see it because they get so many.
But here is the deal, you don’t know unless you do it. You’ve written the letter, now you’ve got to send it. And then send an email to her management or agent, making sure they know, “Hey, I’ve sent this letter and I’d love her support.” The biggest learning is that you’ve got to have a specific ask. I also wouldn’t do multiple asks. Because if you do multiple asks, it can feel overwhelming.
I wanted to take a minute before we wrap, would you be open to a little bit of feedback on your website?
One hundred percent. I’m actually planning on redoing a lot of it.
It looks like you made it on Squarespace is that right?
Yeah, it’s a great website. Did you do this yourself?
Great job, dude. That is a lot of work.
I’ve done everything from creating the logo, the legal paperwork, the website, strategy, everything.
You are out of control, that’s amazing. Alright so, I have made 4 feature length films. One is a narrative. The first three were documentaries on social justice issues. One was on orphans in India. The second one was on sex traffic in the United States. The third one was on a faith-based group which some people would consider a cult.
So, my first documentary, it actually got picked up on Netflix for two years and that was really exciting. We did two big premieres here in Orange County, several hundred people at each and people came out crying.
I had been to India 8 or 9 times already and a buddy and I and a cinematographer, we went to India and we hung out with this group of orphans living alongside a railway for two weeks. There was 25 of them and they kind of lived like a family; aged 3 all the way to 23. We interviewed them and we got to know them. If people are interested, they can go to www.motherindiafilm.com. It’s on Amazon, you can watch it. But it’s really sad. It’s really, really sad. Kids, they are either orphaned or they are abandoned. The two youngest kids were three and five years old, their names were Koteswari and Polayya and their parents were alcoholics and they had basically just abandoned them – a three and five-year-old, Elijah. Can you even imagine a three and five-year-old living alone?
So, we tell their story. We hang out with them. We are trying to get them help and people at the end of the film are so overwhelmed because some of these orphans that were living by the railroad station would jump from car to car and beg for money. In India if you are little kid and you act like you are washing the floor or something, it looks like they are doing work and someone would give them a few Rupees. Well the problem was, they would fall off the train and then one of their limbs, an arm or a leg would go under the railcar and get chopped off. So, tons of them were missing limbs, which ironically, Elijah, allowed them to raise more money by begging. It made them look more helpless because they were missing a limb. It’s just a really sad situation. Here is what I learned, sadness doesn’t motivate action. Sadness doesn’t motivate action.
I 100% agree.
But here is what does motivate people, anger – anger motivates. Inspiration also motivates. Anger and inspiration, but sadness I’ve found –it was a tough lesson after I’ve done this whole documentary, sadness doesn’t motivate people to help. It actually kind of paralyzes people. It makes them feel like, “Oh my gosh, this is just so painful. I don’t even know what to do.”
Go away. Go away, I don’t want to keep looking at it. That type of thing.
Right. It works a little bit. Now when I was a kid there were these television commercials by certain organizations. There was a big famine in Ethiopia during the time when I was growing up and they would show these kids with flies all over them and their stomachs were bloated because they hadn’t been eating. They were really malnourished. It was just so sad. It worked back then, but people caught on and people started to say, “I don’t want to see that anymore. That’s manipulation. It’s too overwhelming.”
So, I’m bringing this up to you about the website because when I visited your website, I felt sad. I felt so sad because -.
How come? Yeah –.
Well, the pictures of the five individuals – the five young men on the front. Obviously, they are all in wheelchairs, which is a reality but they are not smiling. They are disconnected from other people. It’s not communicating a relationship. There is no sense of hope.
Also, the colors red, grey and black tend to communicate urgency and intensity, which is okay. That’s okay, especially with the word “Destroy”, that’s an intense word. But I found that when I scrolled down to “What is Duchenne’s?” and I look at the blue with the DNA, now I start to feel like, “Whew, okay. I’ve got a mental breather because of the colors.” And then I get back to “Our Movement” and I see the young man with “Control Your Destiny” and he looks so sad.
Let me tell you my thoughts behind it. I’m totally taking your advice; don’t think I’m putting it off.
Of course, I want to hear what you are thinking.
A lot of people have told me, “Make yourself sadder. Make yourself sadder. Make yourself sadder.” I had a firm stance of, “No, we are never going to make ourselves sad.”
People told you that? People told you to make yourself look sadder?
They basically said that, yeah. “If you want to get more donations and you want to make more money, you need to make people feel sad.” I said, “No, that doesn’t work. I don’t believe in that.”
My position at Destroy Duchenne is we will never purposely make content or images that is intended to make you sad, but we will always show you the reality of the disease no matter what. This is a reality. The reason no one is smiling in those photos is because this isn’t a happy disease. This is nothing to be smiling about. This is something to be serious about. That is kind of what we were going for there. We never intended to make people sad, we just wanted to show the reality of the disease.
But you since you said it made you sad, I definitely want to change that, but that’s been Destroy Duchenne’s position. If you don’t get the content we post on social media, it’s very inspirational. I’m a big believer in hope and being positive. I think positivity actually will do more in the long-term then being sad. I don’t think that works at all.
I’m looking at a website called www.joyinjacksonsjourney.com. Now, this is a little bit more kiddy like, but this is a mom who’s created this website – joyinjacksonsjourney.com. These are obviously other Duchenne websites, but you could look at other websites around certain diagnoses that could be inspirational.
I think the challenge that I have oftentimes is I like to create things that resonate with me and that I think are really cool. I have to wrestle with going, “Okay, who is my target audience? Who are the people that I’m shooting for? That I’m wanting to raise awareness?” I’m going to tell you that I think your best audience is not celebrities, it’s not entrepreneurs, its moms.
I 100% agree.
Moms have a compassion – a deep compassion, especially because you are younger when you were diagnosed. Your brother’s – all of these issues, moms are the ones.
I definitely agree, because moms – losing a child, that affects moms the most. And that’s what Duchenne does. Duchenne robs moms of their kids. I totally agree that moms are our target audience.
So, if you pull up your website and look at your logo or the font or the colors or the pictures, I think that this is what you like, right? This is the color scheme and style that you like. There is nothing wrong with that because it’s awesome. But the challenge that many non-profits and entrepreneurs face is, “Do I create something that I like? Or is it something that my target audience will resonate with and like?” So, if a mom goes to your website, maybe just a few small tweaks.
I like honesty. I’ll definitely take it.
For instance, I pulled up www.cureduchenne.org and when I go to that website, the first thing that I see is “Accelerating the Cure. Redefining the Care. Building Community”. I’m seeing a DNA kind of thing in their logo. I’m seeing this young little boy with a bowtie with his arms raised up and he’s smiling. He’s smiling! Now then I scroll down and I see this young kid in a wheelchair with a bat and a helmet on and he’s playing baseball. I’m scrolling down and I’m seeing another kid with his dog by the pool and another with parents in a wheelchair. This website looks very corporate. It looks very medical. It’s a medical organization, I can just tell it looks that way. You don’t want it to look that way. You want it to look personal.
Personal, right. Because that’s what our advantage is, the CEO has the disease.
You kind of gave me an idea right now, I’m thinking of starting something maybe a specific – because I don’t think anybody in the Duchenne community has it – but directed towards moms. Maybe a type of community-based thing, “Mom’s for Duchenne”, where its specially for moms that could sign up via email. “I’m a mom, I want to help Duchenne. I don’t know what to do.” Well, you go to www.destroyduchenne.org and you go to “Mom’s for Duchenne” and sign up there. We can email you things on how you can help cure this disease, I think that would go far. I think even moms that have kids without the disease would still want to be a part of that. What do you think about that?
I love that. And what about a Facebook group? I know you’ve got a Facebook page. I’m looking right now – I typed in “Duchenne’s” on Facebook Groups. I see “Duchenne Muscular Dystrophy”, “Support Duchenne Under 10”, “Duchenne Now”, “Duchenne Muscular Dystrophy”, “Duchenne Optimism”, “Duchenne Family”, “Duchenne Action Group”, “DMD Moms”. I assume DMD is Duchenne Muscular Dystrophy, is that what that is?
Yeah, so there is a DMD Moms group that has 2500 members right here. Is this something that your mom would want to organize and help with? Is that something that she has a personality to help with, other moms? Or is she kind of busy just doing her own thing?
Not to go sad, but with the loss of my brother she definitely has more time now. She used to take care of him all day due to how severe he was. She definitely probably wants to get more involved.
That’s an idea that you might pitch her. There is a difference in the way that Facebook Groups works, they are a lot more interactive then Facebook Pages. So, I wouldn’t create a separate Facebook Page, I would create a Facebook Group. It’s a closed group that people would have to join.
I would actually have her join the existing Duchenne groups, especially this DMD Moms group and see where there is a weakness. Where are they not doing something that is helpful? You’ve got to differentiate. You’ve got to do something different for moms that is not being done. It’s not out of competition, it’s just trying to find out where is the opportunity in the market to help people. So that would be something that you may want to think about.
I was thinking about these celebrities again and you could make even images of the celebrities with inspiring quotes and post those as inspiration. So, they are not specially about Duchenne, but they could be talking about endurance or tenacity or patience or whatever it might be. It’s just another way that you can create content to get out into the world and you are tagging the celebrities and getting their attention.
I want to wrap up here, but I think the things that are lessons for anybody to take away here is if you are looking to get somebody’s support, there has got to be a specific ask. That’s one.
The second is, how do you contact people in multiple ways? Not only through email but I love your idea of a written letter and then also on social media.
Lastly, just thinking about, “Does my presence,” – not only through a website, but through video, Instagram, logo – all of that, “Does my presence just resonate with more me or does it more resonate with the person that I’m trying to reach?”
So those are the kinds of things I would encourage you to think about. Who is that person that has the greatest possibility to spread my message? Moms. Moms are those ones. So, now what would it look like to create something that was attractive to them? I think that would be a great question.
Alright, I’d love to follow up with you in another month or two. Maybe we do a quick recap or something and see how your conversation with Selena goes? And see how your meeting with LeBron goes?
That would be great.
Okay so you are going to send that letter and you are going to take a picture and you are going to contact the Lakers and LeBron, right? I believe in you. I totally think you can make that happen.
I’ve got Make-A-Wish too that I’m trying to get done, so hopefully that goes through. I’m just using all my resources.
We believe in you. I think what you are doing is awesome and you just have to keep going. You are so smart, you are so wicked smart and you’ve done so much work already to this point. I’m really, really impressed.
Alright man, you have a good rest of the afternoon.
Alright, thank you for having me. Thank you for the advice. I’m definitely going to look into it and I look forward to talking to you again.