Lyme Advocacy Through Campaigning with Ali Moresco

How She Got Started with Lyme Advocacy

Mimi MacLean:
Hi, welcome back to the Lyme podcast. This is Mimi MacLean and today we have Ali Moresco, and she is a Lyme warrior advocate and philanthropist that has worked to raise over $500,000 for Lyme research. She’s the co-host of the Slightly Spiritual podcast and the co-founder of Advocacy Express, a nonpartisan platform that reaches out to state and government representatives to advocate for various issues important to their communities. Ali has worked to raise voices through letter campaigns and boost government awareness and underfunded and neglected issues such as chronic Lyme disease. To get my detox for Lyme checklist, go to Lyme360.com/detoxchecklist.

Mimi MacLean:
Ali, thank you so much for coming on today. I’m excited to talk about everything that you do for the Lyme community. I feel like every time I turn around you are somewhere and doing something with the Lyme community. So thank you so much.

Ali Moresco:
Oh my gosh. Thank you. I feel so cool that I get to be on your podcast, so thanks for having me.

Mimi MacLean:
Well, you were one of the original people starting a Lyme podcast and then you switched over now and you’re doing this Slightly Spiritual podcast. But I think one of the things I love that you’re doing is the Advocacy Express. And is that your one year anniversary? What year anniversary? Is it one year?

Ali Moresco:
Yes. In mid-November it will be one official year of Advocacy Express, which I’m very, very excited for.

Mimi MacLean:
That’s great. Can you tell us a little bit about that so if people want to get involved, they can learn about it?

Ali Moresco:
Yeah, absolutely. I obviously, like so many people, got sick with a mystery illness. Took two years to get diagnosed. And that was now six or seven years ago. And then by the time I finally got my diagnosis, I was essentially bed-ridden and had to stop working. The whole nine yards. But still needed something to focus on so I started fundraising for tick-borne disease research. And then as I got deeper into that, I realized that there are also so, so many deeply rooted issues as far as our government agencies go in relation to tick-borne disease, Lyme disease. It’s very outdated. There’s so much controversy around it, as we all know. So it hit me. I was like, “Wait, it doesn’t matter how much money we raise. Until the legislation and the CDC directives and all of these things start to change, nothing, in my opinion, is really going to get better for Lyme patients.”

Ali Moresco:
So I started reaching out just to my congressmen, congresswoman, members of the Senate, local representatives in Illinois, and just starting to get Lyme and tick-borne diseases on their radar. And then I went to DC, and this was in February of 2020, right before the pandemic, to lobby with Center for Lyme Action for the Kay Hagan Tick Act. And it really just opened my eyes to how politics really works and to the fact that what I heard when I sat down with all of these different politicians from all across the US was that if their constituents don’t know or don’t make it clear to them that they care about tick-borne diseases and Lyme disease, they are not going to fight to change it because ultimately their goal is to work on what their constituents, the people that live in their communities, want so that they can get reelected. Because that’s what they care about.

Ali Moresco:
So it hit me and I was like, “Oh my God, we have to figure something out.” So I started organizing these letter-writing campaigns just through Instagram where I would basically just tell people, “Send me your email and I’ll send you an email template. And all you have to do is like pop in your representative, or whoever it is, information and hit, “Send in an email.” So then my husband and I, who he used to work for the governor of Michigan, he knows public policy very, very well and political science and all these things. We started reading a lot of these reports. Very deep, years-long reports about of the government and how it works, like OpenGov and all these things. And what we found was that actually only one third of the emails that we send to our politicians are actually opened.

Mimi MacLean:
Wow.

Ali Moresco:
Yeah, which is really crazy. And honestly, I always like to say like it’s really not their fault. It’s because these offices are severely under staffed and there literally is just not enough people to go through these messages, because they just get inundated day in and day out. So we started researching, okay, what’s the best way actually to get in touch with your politicians and have your voice heard? And we realized it was letters because letters are the only form of communication between you and your politicians that have to be legally opened and documented.

Mimi MacLean:
Not phone calls?

Ali Moresco:
Not phone calls. If you call and let’s say you forget to give them your zip code or your address or your full, it doesn’t count. So there’s all of these factors that go into politics and legislation. There’s a lot of gate-keeping, obviously, that goes on.

Ali Moresco:
So I just decided one day. I was like, “Okay, we have to do something about this and we have to start letting our representatives know that all of these people, hundreds and hundreds of thousands, probably millions of people in the US and all these districts are suffering from tick-borne disease and Lyme disease.” So when I started doing these letter-writing campaigns, eventually it was getting, like every single time I put a call out for this, it was like 500 to 700 people that were responding. And I was like, “Oh my gosh, I can’t keep doing this. This is too much for me to take on.” So my husband and I put our heads together and we came up with Advocacy Express, which essentially is we have a team or we have a public policy writer that, literally, their sole job is to write letters for different districts to different politicians and representatives on behalf of constituents.

Ali Moresco:
And this is all self-funded. This isn’t anything we make any money on. We’re funding it ourselves, and the only thing people have to do is they basically supply the money for the stamps and that’s it. And then we write the letters and we literally mail them on your behalf. And we started with a Lyme disease letter. Now we have an SSI letter, which covers disability rights, which hasn’t been updated in a crazy amount of time. People are living well, well below the poverty level if they’re on SSI. So our goal really is just to tackle all of these different tick-borne disease and chronic disease issues that aren’t getting enough attention. And we all know that when you’re so sick with a tick-borne illness, the last thing you have the brain power to do is sit and write a letter. So I was like, “Okay, we just have to make this easy on people and give them the ability to have their voice heard while they’re still so sick.”

Global Lyme Alliance and Getting Involved

Mimi MacLean:
And you know what I realized, too? Is it doesn’t take that many letters for them to actually put it on their docket or realize that there’s a problem. How many letters does it take for a congressman or senator to say, “Okay, I have to make this a priority?”

Ali Moresco:
It depends on the office, but I picked the brain of a fairly large political consultant who helped to get a few different very big female senators elected. And what he had said was, was when he was working in Senator Catherine Cortez Masto’s office was that literally all it took was for them to get 10 letters on a subject. And literally those letters were all on the senator’s desk. So really it only takes as little as like 10 letters from different constituents to get their attention, which really isn’t a lot when you think about it and you think about the amount of people that live in a district.

Mimi MacLean:
Right, which is crazy. Which is good that to know, that you can make a difference just by doing it. So anybody who’s listening, go to Advocacy Express. And that’s where you would request to have a letter sent and make the donation for the stamps. It’s really useful. And then I know you’ve also been really involved with the Global Lyme Alliance. Are you still involved with them?

Ali Moresco:
Oh yeah. I love to torture them.

Mimi MacLean:
So you want to talk a little bit about that as well?

Ali Moresco:
Yeah, absolutely. Like I said earlier, when I got sick… By trade, I’m a publicist. I used to plan a lot of large events. Brand events, celebrity events, stuff like that. So it’s just what I’m good at and what I knew how to do. And after I went to my first LLMD appointment and was like, “Oh my God, this is all out of pocket. The blood work isn’t covered. Nothing’s covered.” And I really started looking into how marginalized tick-borne disease and Lyme patients are treated. I was like, “Okay, well I have to figure something out. I have to do something about this.” So I started researching nonprofits and foundations, and kind of just stumbled upon Global Lyme Alliance. And sat and read their annual report. And at the time… I have not read it probably in the last year or two versus the other organizations, but at the time… and they very well still could be. I want to just make that clear.

Ali Moresco:
At the time they were the highest, per their annual report… Essentially, the money that they were bringing in from donations, the highest percent of that money brought in was actually going to research and to patients, not to salaries or how some of these other organizations are, which I really, really liked. So I reached out to Global Lyme Alliance, literally in a blind email, and was like, “Hey, I live in Chicago. Let me help you.” And they probably were like, “Oh my God, who’s this 22 year old girl that got our email?”

Ali Moresco:
And eventually they responded and I ended up connecting with another Lyme patient in the Chicago community. And we started what went on to be the second largest Global Lyme Alliance fundraiser ever called the Sub-Lyme Story. We started it in Chicago and basically it was a gluten and dairy-free gala that brought Lyme patients together. And we funded research and all these amazing things. So that’s kind of how it started. And from there I’ve just continued to work with them and fund everything from antibiotic research to research for care to that looks into how spirochetes impact us neurologically and psychologically. And they’re just a really great organization doing great work. And I’ve gotten to know truly some of my best friends through volunteering with them and raising money.

Mimi MacLean:
So if anyone wanted to get involved in Global Lyme Alliance, what’s the best way to do that? Just to reach out to them directly? Or isn’t there different levels you can be or something? They have like an ambassador?

Ali Moresco:
Yeah. Now they have an ambassador program, which is great and it’s truly an organized effort across the US. And ambassadors can pick and choose how they want to be involved. I know some of them will go into elementary schools or high schools and give talks about Lyme disease prevention and tick checks and all these things. Some of them go and talk to their representatives, talk to their politicians. They write letters. It’s nice because, with GLA’s ambassador program you can kind of be involved as little or as much as you want to be, or as your health permits you to be. But no matter what, you’re making a massive difference by doing it.

Working in PR and Transitioning to Lyme Clients and Lyme Advocacy Through Activations and Marketing

Mimi MacLean:
So you did PR before you were sick, you had to go out on disability. But you are also still doing that, and it seems like you’re doing it for some Lyme people too because every now and then I get different emails and requests from you for guests. So are you able to still work or did you start your own thing? What are you doing professionally?

Ali Moresco:
Before I got sick I was in entertainment and celebrity PR. I owned my own firm and I loved it. And then unfortunately got sick. Much like other people, had to completely stop working for treatment. Could barely open my eyes or get out of bed. And honestly I had kind of come to terms with the fact that I might never work again. And I was in my early twenties. I was like 23 or 24 and I thought, “My God, my career is over. What am I going to do with myself?” Because just neurologically I was in such distress. And still I have neurological issues and some days are more difficult than others. I know as we all feel. But I ended up… I think March will be two years. I went back to work and I decided that if I was going to work again, it would only be things that benefit the tick-borne disease community, the chronic illness community that I felt like would truly make a difference for people.

Ali Moresco:
So I started taking on clients specifically in the tick-borne disease space, like Case Integrative Health and iGienics and Mighty Well and all these different organizations that I really believe in and love and adore. And now essentially I handle all of their public relations, their celebrity activations. Anything really under the communications umbrella. But some days look different than others, and I’m just really careful not to push myself and to listen to my body. And it’s one of those things where nothing is worth your health.

Mimi MacLean:
Definitely, it’s true. We were talking about this before we got on, but I think you and I both agree that I think Lyme disease is like kind of like mono or EBV, where it kind of stays with you. I know that’s kind of debatable. So right now in your journey, you’re not back 100%?

Ali Moresco:
No, I’m not back 100%. You know what? I might not ever be, but my quality of life now is so much better than it was even a year ago, two years ago. And I know I’ve heard so many other patients say this, I’m sure you feel the same way, that once you are so sick and you experience that, even the most smallest this things you can appreciate. So while I might not be 100%, I’m just so happy to be able to do anything or go for a walk or things of that nature. And personally for me, I know that chronic neurological Lyme and that, unless there is some kind of very serious care that’s down for people that are in the late stage of Lyme, which I do hope we see in our lifetime because there’s so much amazing research going on and so many efforts dedicated to this. But I’m probably going to have this trust of my life. And I’m okay with that, and I just know I have to manage it.

At-Home Treatment and How Ali Keeps Symptoms At Bay

Mimi MacLean:
What do you find work best for you, managing it-wise at home, that you do? Or even not at home. Just any kind of treatment.

Ali Moresco:
Yeah. For me, people always ask me, “What do you feel like helped you the most?” And I always like to talk about battling Lyme like peeling an onion, because as you peel away other things pop up that you have to address. I did a lot of treatment, so I don’t want to make it sound like there was one silver bullet that really helped. But for me it was two years ago, actually this month, I started IVIG therapy, which is immune globulin therapy. And I still do that two weeks out of every month. And it truly has been a game-changer for me. So that’s medically what’s going on right now. And then as far as just managing my symptoms and stuff day to day, I’m very proactive with my health.

Ali Moresco:
I try to eat a very low inflammation diet. I do a lot of infrared sauna, a lot of Epsom salt baths, and take binders, and I rest a lot. For most people, a full day is probably like eight, 10 hours, stuff like that whereas there’s some days where I’m really only active for half a day or four or five hours. That’s all my body will allow me to do. And I just listen and I don’t push myself. And it sounds so simple but I think it’s one of the best ways to manage how you feel.

Mimi MacLean:
If someone were to call you and say, “Ali, I just got Lyme or I have Lyme and I’m waiting to see my doctor. I don’t have money to go see my doctor. What can I do at home to start the process of healing?” What would you say?

Ali Moresco:
I always like to… Because obviously Lyme is such an expensive disease to treat, like all chronic diseases are, but we have it more difficult because insurance is certainly not on our side with things. The first thing I always tell people… this isn’t necessarily something to do at home. I just always like to mention it, is Lyme Treatment Foundation. Apply for Lyme Treatment Foundation grant. They now actually have a partnership with iGienics where you can apply for testing grants to get an accurate, efficient diagnosis. So go to Lyme Treatment Foundation, apply for a testing grant. And if you get that and you get tested and you have Lyme, then apply for a treatment grant. And that will get you pretty far. So that’s number one. Number two: people that have just been diagnosed, I always like to send them to Global Lyme Alliance’s Peer to Peer Foundation.

Ali Moresco:
So my, actually, partner with fundraising and my co-chair for all my events, Casey Passon, who very, very, very sadly passed away, she started this peer-to-peer initiative with Global Lyme Alliance where essentially, if you’re a newly diagnosed patient, you can submit a form through the Global Lyme Alliance website and they will match you with essentially a Lyme veteran. So they might match you with somebody like me for mentorship and emotional support and guidance. And it’s really a phenomenal, in depth resource for people. So I think those are probably the first couple of places or things that I would tell people to do. Also, I know it’s much easier said than done, but don’t lose hope. I was sick for so long. Couldn’t get out of bed. Everything that so many other people are experiencing. And I know some people really like to hear this and some people really don’t, but it took me five years to find something that really worked.

Ali Moresco:
If I had given up before that, we never would’ve figured it out and who knows where I would be. But it’s so trial and error with treatment. Don’t get discouraged if the first thing isn’t this massive help that you are hoping it to be. You just have to keep going and you have to keep peeling back the layers. And I guess the last thing that I’ll say that was just really good for me through my Lyme journey and still is to this day is just getting involved with the community. Whether it’s through a generation Lyme support group, or through listening to the Heal podcast, or listening to all these other amazing things. Whether it’s going to virtually events, whether it’s fundraising, becoming an ambassador, sending one letter to your representative. It just gave me that purpose that I needed when it felt like so much had been taken away from me. It was mentally a really good thing.

Celebrity Lyme Advocacy and Awareness

Mimi MacLean:
Those are great advice. Thank you so much. Now, in the news lately there seems to be a lot more celebrities that have come out talking about Lyme. Do you think it’s because there’s more of an increase or is it just more accepting to talk about what’s going on in their personal life?

Ali Moresco:
I think it’s all of the above. I think… I was actually just having a conversation about this with someone else because actually, for one of my clients, we’re about to partner with like a fairly big celebrity. I’m very excited for that. But there is obviously still scrutiny involved with coming out that you’ve been diagnosed with Lyme or a tick-borne disease because there’s always going to be the naysayers that don’t understand or think it’s easy to live with, or people are being dramatic. So I certainly understand why celebrities and public figures don’t want to come out about it, because it’s like you’re battling this insidious disease. Do you really want to be tormented online too? But I think there is a lot more awareness now. And as we see more people come out with it, it’s like a domino effect. Then there’s other public figures and celebrities that know it’s okay to publicly come out about it because there’s others in alignment with them. They’re not just alone.

Ali Moresco:
I think the uptick of celebrities being diagnosed with Lyme. And honestly I think there’s a lot more than we even know about publicly that are confirmed. It’s due really to education and awareness. And it’s just like for patients. This is why it’s so important to share your story and educate your loved ones, family, friends, et cetera on Lyme and how to prevent it and what to do if you get bit by tick and the symptoms, because eventually somebody is like, “Oh my God, I have that symptom.” And then they reach out and they know where to go get tested and how to get tested properly.

Ali Moresco:
So I think it’s just something that now we’re slowly starting to see the mainstream medical community accept as an option for testing when people do have these quote unquote mystery symptoms and they can’t be fit in a neat little box as Western traditional medicine likes to do. So really I think it’s just due to educational awareness and the knowledge now that medical professionals have that, “Oh my gosh. Tick-borne disease is actually a threat and I should test my patient for this.” That’s just what I think.

Advocacy Express and Her Goals Moving Forward

Mimi MacLean:
No, it’s true. And then with your Advocacy Express, do you find that it’s a bipartisan issue or do you find that one party is more open to hearing about it and doing something about it and reading your letters?

Ali Moresco:
Originally I would’ve said… When I first got into it there was absolutely one side that was more interested in it than another. Now I would genuinely say it is a true bipartisan issue. We have support from both sides. Democrats, Republicans, everybody. And I think number one, it goes back to we’re living through a vicious pandemic right now. And whether you’re Democrat or Republican, no one wants to see that happen again, even though you and I know people are already suffering and they have been for a long time at a mass scale. They’re just starting to recognize it. Just starting to get it in front of them, because of COVID. A statistic that I always really like to give, for example, about Advocacy Express… And keep in mind when you’re listening, this is just what we know of because it’s up to the Advocacy Express subscribers and supporters to let us know when they get responses back from their representatives, because they do not come to DJ and I. They come directly to you.

Ali Moresco:
We know in the past year we have successfully flipped 40 politicians to taking on tick-borne disease, Lyme disease, putting appropriations forward which is funding for research, for legislative change, which I’m really happy about. And that’s split from both sides, between both parties are very passionate. We certainly have a few champions from each party that always step up to the plate but my thing is, it doesn’t matter who you are. A tick-borne disease can affect you anytime any day, any part of your life. So I literally will talk to anyone about tick-borne disease. Doesn’t matter what party you’re in. Doesn’t matter how I personally align. I’m like, “Let’s just all come together and get this done because it should be a bipartisan issue.” And we are finally seeing that with the passage of the Kay Hagan Tick Act, which was that $91 million that we got passed and then funded, because just because something’s passed doesn’t mean it’s funded, which is why letters are so important and reaching out to representatives are so important because if something’s passed and not funded, it really doesn’t do anybody any good.

Ali Moresco:
But unanimously, both sides came together on behalf of that legislation, to get it passed and then funded. And I know as of this month they were going for another $8 million in appropriations and all of these things. So we’re seeing even advancements on both sides as we speak, which is nice.

Mimi MacLean:
That’s amazing. Well, thank you for all you do. And for anybody, again, Advocacy Express is where you go to donate so we can get the letters out and keep moving that and get more than 40. Hopefully we can double that or triple that and keep increasing our appropriations.

Ali Moresco:
Absolutely. And like I said, I think there’s a lot more of that out there that we don’t even know of. But 40 is a huge improvement even from when we started this a year ago, and the more politicians we can get in front of, the better. So I’m very grateful to anybody who’s willing to send a letter or do any few minutes of advocacy, because it really does make a big difference. People can’t even imagine.

Mimi MacLean:
Okay, great. Awesome. Thank you so much, Ali. And I really appreciate it.

Ali Moresco:
Thank you. This was so great. And thanks for letting me talk your ear off.

Mimi MacLean:
Always. I could talk about Lyme forever.

Mimi MacLean:
Each week I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on, and I am so happy you are here. Subscribe now and tune in next week if you want to learn how I detox. And if you want to check out my detox for Lyme checklist, go to Lyme360.com/detoxchecklist. You can also join our community at Lyme 360 Warriors on Facebook, and let’s heal together. Thank you.