An Interview with Administrative Director, Noah Johnston
What is Project Lyme?
Project Lyme is an organization with a mission to eradicate the epidemic of tick-borne diseases by:
- Spreading awareness
- Providing educational resources
- Funding peer-reviewed research
- Supporting advocacy for solutions to end the suffering
As a result, Project Lyme has raised over $4 million since 2016 to combat the effects of tick-borne diseases. Additionally, their interactive tool, Your Lyme Journey, provides resources and guidance for Lyme patients and their loved ones for every step of the way, including:
- What is Lyme?
- Understanding Tick Bites
- Seeking Diagnosis
- Exploring Treatment
- Achieving Remission
Project Lyme has recently launched Generation Lyme, a community built to empower young people facing Lyme disease. This network of 250+ meetups with 3,000+ attendees helps provides a safe space where patients and their loved ones can feel supported, connected, and inspired. Learn more at https://www.genlyme.org/
Where to Find Project Lyme
Other Resources & Links
FB Group: https://www.facebook.com/groups/236365280849360/, run by Dr. Robert Bransfield.
Transcript of the Interview
Mark at Insect Shield
We're here today with Noah Johnston of Project Lyme. And just [hoping to learn more] about what Project Lyme is up to. This is a pretty well established organization. Noah is the Administrative Director of the organization. So the goal is just to find out about you guys and what you're doing to learn more about you. I think you've got a big event coming up. So we want to learn about that. And then you've got your kind of different programs, right? You guys are doing a lot of different stuff. So we're just going to talk about that for a few minutes and learn more about Project Lyme.
Noah Johnston at Project Lyme
Yeah, that sounds great. Mark, thanks for having me on. You're exactly right. Project Lyme was founded in 2016, in Maine, and since then, have moved to New York City in 2018. And it continued working to make progress in New York State and nationwide. For the past several years, as, quote unquote, an established organization, we have raised over $4 million since formulation to put into a variety of different programs, including research based, we have a partnership with Bay Area Lyme Foundation in San Francisco.
And we also put a lot of work into education awareness, we actually just recently came out with a new website in March of this year, really focused around the Lyme patient’s journey back to health focusing on that education that's needed, as soon as you get all the way through potential treatment options and ways that you can get involved with members of the community. Because it's really important to note that with Lyme disease some people can be treated early and have no symptoms and be fully healed, around 10% to 20% of the patient population has chronic symptoms. So that's really who we support in terms of like, patient education and patient engagement is that portion of population that just continues to fight these symptoms. So yeah, there's really a lot of stuff going on. And I'm happy to talk about each individual program a little bit more in depth.
Mark at Insect Shield
Before we get into that, how'd you get interested in Project Lyme? If I can ask, is [Lyme disease] something that you've experienced yourself?
Yeah, that's a great question. And personally, I have never been diagnosed with Lyme disease. I'm definitely one of the unique people working within this space who hasn't really been directly impacted by it. However, my dad was diagnosed when I was younger, he dealt with symptoms for a couple months, which is not uncommon. But since then he has recovered. So I had a very basic understanding of Lyme disease, more of an in depth understanding of nonprofits, when I joined the organization, but since joining in April of 2020, I've kind of had the crash course, on all the ins and outs and things like that within the Lyme community, including misconceptions and ways that we're working as an organization to really make progress for the patient community.
Mark at Insect Shield
Right. I mean, I guess that's kind of a cool thing, because you're, you're kind of a bridge between the people that actually are dealing with the situation, and then you can kind of bring your knowledge or, or whatever, to kind of find out more about it. I mean, I don't know how aware the general public is of Lyme disease. I mean, that's kind of one of the problems that you guys confront, right, is that there are a lot of doctors that are not aware. People have challenges because they don't get diagnosed right away in certain cases, stuff like that. So is that one of the things that you guys do is help people to find doctors that are engaged with Lyme patients or have that kind of experience?
Yeah, that's a great question. I think I first want to speak to your thought process behind how I can be a bridge between the patient community and the non-patient community where I myself lie. I think that that has proven very true since I joined the organization and have really expanded upon our educational offerings through both social media, our website content as well as events.
So far this year in 2021 we've hosted over nine events with over 1,500 attendees specifically focused on education and awareness content. This has been hosted events very similar to this type of setup with zoom events hosted by myself with doctors, advocates and patients in the space to help them convey their very nuanced message of the issues with diagnosis, the issues with testing, the issues with even comprehending symptoms, bring that to the layman's terms and be able to ask the questions about the information that I didn't know before I joined the organization.
So I think that is really where I can be that bridge, as you had discussed. And then a little bit more specifically to the concept of educating doctors as well. And trying to connect patients and doctors while at the moment, via our website, we do not have a patient portal for a doctor referral program. That is something that we are working on internally, developing a very long list of quote unquote LLDS, Lyme literate medical doctors, people who really understand Lyme disease in all the nuances that are within that. Usually, they've been trained by ILADS, which is the International Lyme and Associated Diseases Society. So there's a very specific set of criteria that Lyme patients should definitely look for in a doctor, especially if they're experiencing chronic symptoms. We're looking to offer that, but it's gonna take a couple additional months since we just rolled out the website back in March.
Mark at Insect Shield
Okay. Got it. That's really cool. So just, yeah, that raises a question for me. So the website is ProjectLyme.org. And so if anybody like is looking at this video, and they think Well, yeah, I want to learn more about that they can go there. But what do you do? You know, how does somebody contact you with any kind of question? I mean, they're gonna submit the contact form there, or what's the best way to do that?
Yeah, that is a great question. We do have an email@example.com email address. It's staffed, basically 24/7. If you have any questions, you can feel free to reach out. As a nonprofit, we're definitely limited in the type of medical information that we're able to tell people in terms of like, dosage levels on medicines and things like that. But anything that's factually based, for example, I received a question yesterday about Uveitis, which is a type of eye inflammation that can be compounded by Lyme disease.
We recently hosted an educational event with some medical professionals who are ophthalmologists and specifically address that topic in the webinar. So what I was able to do was share the educational information from our website that has been not only kept in video form, but also expanded upon in text form to dig a little bit deeper into the what, why, how related to Lyme disease and other types of illnesses. Because the biggest thing is that with Lyme disease, because it's a spiral keto shaped infection, it really impacts all bodily systems, because it's able to corkscrew its way into your muscles, your joints, anything like that, which is why people feel full body fatigue, a lot of genetic issues, brain inflammation, and that inflammation is what causes Uveitis. So like, that's how, as an organization, we're able to help people better comprehend.
But from there, we're not able to then say you need to take this to combat the inflammation, it's now you need to seek more advice from a medical doctor, and now that you understand the basic underlying concepts, which is why we're working on that providers list so that we can pair the education that we provide with that direct resource in a certain person's like geographical region.
Mark at Insect Shield
Yeah, that's awesome. Um, I know there's a lot of info out there and stuff. Somebody Google's Lyme disease, you're gonna see a lot of stuff. But yeah, one of the things that we're trying to do here with Insect Shield, is just help people get specific info and identify an organization that can help with whatever it is that they're looking for.
So, we'll put some links below the video here or maybe even above the video to help people you know, direct them in the right way to what they want to find - some of the things that you're referencing as well. Let's talk a little bit more about some of the efforts that you guys are making. You're supporting research, right? Is that one that you mentioned? $4 million?
Yeah. So we've raised $4 million. As an organization, since we were founded about over $1 million of that, I would say it's like $1,100,000. $1 million has gone directly to research that's in partnership with Bay Area Lyme Foundation, which is the research organization in San Francisco that really administers a lot of the day to day with that, but we have research objectives that we share with them, which is to really focus in the areas of diagnostics, and therapeutics because there are so many issues with testing, the CDC and ILADS, and a lot of other organizations can’t agree on one best test, which is why we're continuing to put money into the concept of trying to figure out better specific diagnostics.
For those who want to learn more about the specific projects that we have already invested money into, you can go to the our impact page, on our website, there's a really long list of 10 different studies that we specifically have funded since 2018. When we established that research partnership, at the moment, none of them have come to publication. Usually it's a two to three year time span. So those 2018 studies that we have put money into, they will be coming to publication by the end of this year, which is really exciting for us as an organization, that's our next step in having research publications with our name on it, that are really making progress in the space of diagnostics and therapeutics.
However, since they haven't come to publication yet, I can't get in the specifics of any research that we have funded until it gets to that point, because it's still currently private knowledge. It has to go through all the appropriate approvals and peer reviews and things that make it high quality research that then impacts change on diagnostics that are available to people when they actually are going to get tested.
So yeah, that's a really exciting partnership. We've been working with them for years, and will continue to support and funnel money towards those research initiatives moving forward.
Another piece of our mission and another tier of like the four tiers that hold up Project Lyme, which are education, awareness, advocacy, and research is the Center for Lyme Action is an advocacy group that was founded in 2019.
With Project Lyme as one of the founding charter members, we've continued to contribute money to them, they're a 501(c)(4), which means they are legally allowed to advocate 100% focused on advocacy and lobbying in Washington, DC. So we as a 501(c)(3) are not allowed to do that. But we can give them money and support them with volunteers and a lot of things like that. They literally just had an event yesterday with four different congressional representatives, representatives from HHS, and the NIH to discuss the increased funding that has come to Lyme Disease Research in the past year or so.
Previously, the patient funding was like $63 per patient versus similar vector borne diseases that I know Insect Shield actually protects against like malaria, and West Nile, things like that, that wearing Insect Shield clothing will help to keep you from being bitten things like that. But those closer to $1,000 per patient spending versus $63. Yeah, it's just a really huge funding inequity. So since last year, there's been a $10 million increase in funding to now bump it up to about $170 per patient. However, that's still a huge disparity between $1,000, so that's the main purpose of center for Lyme Action is to push for that legislative progress on a federal level to grow the funding.
And then the last one that is really an initiative I know it's very close to the hearts of our board of directors is Generation Lyme, which is a community built to empower young people facing Lyme disease. It's been an initiative for Project Lyme for several years now and it's funded founded by several members of our community, including someone who is a board member of Project Lyme, and has since founded the initiative and they really run it day to day with a huge volunteer base. They host meetups, basically four or five times a week via Zoom, that average like 10 to 20, chronic Lyme patients that are attending on a daily basis, really as a support feature. It's talking with other Lyme patients to say, how did you get through this treatment, or here's what happened with my experience - that really supportive culture.
That has expanded a little bit into also accommodating to caregivers, or partners and people who may have been impacted by chronic Lyme disease. For example, like, there's a quote unquote, partners meetup, where it was couples that all one or both of the people had Lyme disease, and then discussed how it really impacted their relationship and how they got through it. And, and all of those things that is really hard to offer to a community that is bedridden his fatigues can't necessarily go out to a bar to meet people or find a community. This is a way that a community can be brought to them, which is really exciting. And why Project Lyme supports the initiative so heavily.
Mark at Insect Shield
Yeah, that's great. So people can find out more about that on your site as well. How does someone get involved with that? I mean, if they just show up at a meetup, or how are they introduced to that community?
What you can do is either go to our website and hit the Generation Lyme tab, or you can go to GenLyme.org. They have their own website set up for the purpose of processing new individuals that includes a calendar where you can sign up for a Zoom, you'll get this private link. And you'll be able to see what type of meetups are available when they're being hosted. Because not every meetup is going to be perfect for every person. You know, if you're a single individual, you don't want to attend the partners meetup. There's also men's specific meetups, there's women's specific meetups, there's just general ones.
So it's really important to look a little bit more into their calendar before you just sign up. But it's really great if to join and get exposed to, if you're interested in volunteering with them. Usually, we suggest you at least attend a meet up first to see really what the community is like. And then if you're interested in volunteering with Project Lyme, you can also reach out to that info at Project Lyme.org account. We're looking mainly for help with content creation, patient outreach, those type of things where as Generation Lyme is looking for posts and people to be leaders as part of the community. Right.
Mark at Insect Shield
And that's fairly large now, right? I mean, in terms of the number of participants in the meetups as a whole, so that's grown pretty quickly.
Yeah, so it was originally a concept that they did have in person meetups that was back in 2019. But the engagement just while it was there, it has exploded since the COVID pandemic forced the people back inside. And it is really what forced Gen lime to reevaluate their model operating model to switch over to zoom, which is what allowed for such an attendance increase since last year, up to this point of this year, they've hosted over 250 meetups with over 3000 attendees. So that's over a couple year span.
They have around 3000 followers on Instagram. So there is definitely that correlation between who's engaging with the initiative via social media and who's taking that and engaging via zoom. It's really done a great job of building community, for the for the line patients that are out there seeking additional support. Just somebody who can feel like a friend understand what they're going through. That's one of the biggest things from our end is Project Lyme, focusing on awareness and education is for the general public. A lot of people don't really understand the day to day struggles of a patient, whereas Jen line does so we hope to educate the general public and for those who do we hope to provide a safe space for them to be able to go and have somebody to lean on Right.
Mark at Insect Shield
Yeah, that's really great. I can imagine that if you're showing up at a group, you might meet some individual that you feel like you could follow up with or something like that. So maybe some individual relationships might develop there, too.
Yeah, you're exactly right. I know that our entire board and also jet, many of the people in the Gen Lyme community, they all talk about how they've had several, maybe two to three conversations per week, directly with Lyme patients, just explaining, again, their own personal story, how they got to recovery, and trying to provide advice on next steps that you can take it as an individual impacted by Lyme disease. Yeah,
Mark at Insect Shield
I mean, just in the limited reading [I’ve done]… I started at Insect Shield back in March of 2020. So it’s kind of similar to you, I've done a crash course of insect borne disease and Lyme, it's one of the ones where I wasn't that aware of it. But now I see it'd be that one of the things about it is it can affect so many different aspects of your health. And that's a big deal. So, there's a need, maybe for the ability of people who are affected by somebody who has Lyme, that don't really understand. And I've seen a lot of people talking about how they've been kind of ostracized, or people don't get it and they're feeling like, Do I really have a problem? Or people are saying, Well, you know, you'll get over it, or, or whatever it is, that's bugging you. It's not that big a deal. So I imagine that that's really for a lot of people to get into a community where people understand that experience.
Yeah, you hit the nail right on the head. That's exactly the experience that I've heard from having conversations with patients and with several people in the community is that authorization is real, like it happens consistently. So that's why we both operate Project Lyme, and Generation Lyme and we partner with all these other organizations to try to build as large of a network as we can across the country to really focus on educating as many people outside of the community and supporting all of those inside the community.
Specifically related to COVID-19, we did develop a Facebook group called Lyme and COVID. And it was monitored by Dr. Robert Bransfield, still is monitored by Dr. Robert Bradfield. He's a past president of ILADS, very knowledgeable in the area. And he essentially did what we couldn't as a medical professional, he managed the Facebook group gave people very specific advice, very specific, shared studies a lot of those things that allowed people to feel safe, educated, and up to date with a lot of the scientific happenings that have been going on in the past year and a half that had not only impacted the world, but impacted Lyme patients, even more as a immunocompromised Group, a lot of issues trying to get into hospitals worried about how might COVID compound my already existing Lyme symptoms. So it's really about the day to day trying to support patients and educate those who are not patient so that we try to avoid and prevent continual expansion of this disease.
Mark at Insect Shield
Yeah. Wow. That's really great. Well, I really appreciate your time today, Noah, and we'll have links down below the video. Like I said, if people want to follow up again, it's ProjectLyme.org. And then they can go to the site. And then you said there's an email address, which is firstname.lastname@example.org. They can just contact you there. Anything else like in terms of contact or stuff, other stuff that you want to share?
That's probably the best way. If you were to go through our website, I would encourage you to sign up to our newsletter. That's where you'll stay up to date with events that we're hosting. You know, just news related to the Lyme world in general, such as the increased funding or political happenings, advocacy happening, scientific happenings, we try to keep everybody as up to date as we possibly can. So that's what I would encourage, and definitely explore the website. There's a lot of really cool stuff on there.
Our team internally worked very hard on that for about six months. So there's a lot of content we're looking to continue to grow and continue to add to it. And then you can also follow either Project Lime or Generation Lime on social media: Instagram. Facebook and Twitter. You'll see immediately the community that exists there. And hopefully we're able to provide you the same level of support that we've provided so many, countless thousands of people up to this day. So, thanks for having me, Mark.
Mark at Insect Shield
It’s a pleasure. Thanks for your time. And we'll stay in touch. Thanks a lot. Now, again, that's Noah Johnston of Project Lyme. You can find out more ProjectLyme.org.