Episode 100: AIP Community Q4 Update — Research, Advocacy & Community

Autoimmune wellness doesn’t happen in isolation. It’s shaped by the research being published, the advocacy happening on behalf of patients, and the communities that help turn information into something meaningful in everyday life.

In this Q4 Community Update—and the 100th episode of the Autoimmune Wellness Podcast—Mickey Trescott catches up on some of the developments happening across the autoimmune landscape, with a focus on research, advocacy, and community.

First, immunologist and AIP Certified Coach Sybil Cooper, PhD, joins Mickey to discuss a newly published qualitative study exploring the experiences of people with rheumatoid arthritis who participated in an AIP intervention. They look beyond symptom outcomes to explore what it was actually like to implement AIP, the challenges participants faced, what kinds of support helped, and what their diets looked like one year later.

Next, Jaime Hartman joins Mickey to recap the Autoimmune Association’s Hope Journey Walk, where Team AIP participated in Washington, DC, Michigan, and virtually around the country. They discuss the importance of showing up as a community, raising awareness, and connecting AIP with the broader autoimmune research and advocacy landscape.

Finally, Jamie-Nicole Martin, founder and CEO of the AIP BIPOC Network, shares updates on the organization’s work supporting people navigating changes to insurance, medication, and food benefits, along with community outreach, an autoimmune and menopause research project, and plans to expand access to resources in the year ahead.

Together, these conversations show how research, advocacy, and community intersect—and why all three matter for people living with autoimmune disease.

In this episode, you’ll learn:

• What qualitative research can teach us about the real-world experience of following AIP
• What participants in the rheumatoid arthritis AIP study found most challenging
• What happened when researchers followed the RA participants one year later
• How Team AIP participated in the Autoimmune Association’s Hope Journey Walk
• Why connecting the AIP community with broader autoimmune advocacy and research matters
• How the AIP BIPOC Network is helping people navigate changing insurance, pharmacy, and food benefits
• What Jamie-Nicole’s autoimmune and menopause research project is exploring
• Why community resources need to evolve as people move through different stages of life with autoimmune disease

Resources:

• Exploring Participant Experiences With the Autoimmune Protocol Diet in Rheumatoid Arthritis: A Longitudinal Qualitative Study
• Autoimmune Association – Hope Journey Walk, research, advocacy, and patient support
• AIP BIPOC Network
• AIP Certified Coach Program & Practitioner Directory

Episode Timeline:

00:00 – Introduction to the Q4 Community Update and Episode 100

01:56 – Research update with Sybil Cooper, PhD

03:00 – Understanding qualitative vs. quantitative research

05:20 – Challenges participants experienced implementing AIP

08:10 – The role of professional, household, and peer support

10:40 – What participants were eating one year later

13:15 – Reintroductions, long-term success, and lessons for the AIP community

15:50 – Jaime Hartman: Hope Journey Walk & Team AIP

17:20 – What the Hope Journey Walk was like

20:00 – Why Team AIP’s presence matters

22:40 – Community connection and the broader autoimmune movement

26:36 – Jamie-Nicole Martin: AIP BIPOC Network update

27:30 – Navigating changes to benefits and healthcare access

29:30 – Autoimmune disease and menopause research

31:00 – Community outreach and the Abilities Expo

33:00 – Connecting people with resources throughout the autoimmune journey

34:45 – What’s next for the AIP BIPOC Network

36:02 – Episode 100 reflections and wrap-up

Autoimmune wellness doesn't happen in isolation.

It's shaped by the research being published, the advocacy happening

on behalf of patients, and the communities that help turn all of

that information into something meaningful in our everyday lives.

And since our last quarterly update, there has been a lot happening.

We took a break from these updates over the summer, so today we're catching up

on some of the developments from the last few months, and I'm especially excited

because this also happens to be episode 100 of the Autoimmune Wellness Podcast.

Welcome back.

I'm your host, Mickey Trescott, and this is our quarter four community update,

part of a series where we zoom out from the day-to-day of autoimmune wellness

and look at some of the bigger things happening across the autoimmune space.

As always, we're focusing on three key areas: research, advocacy, and community.

And I'm bringing back the same three contributors that

you've heard from in the past.

First, immunologist Sybil Cooper is joining us to talk about a newly

published study looking at the experiences of people with rheumatoid

arthritis who use the Autoimmune Protocol, and what those experiences

can teach us about making dietary change actually work in the real world.

Then I'll talk with Jamie Hartman about the Autoimmune

Association's Hope Journey Walk.

Team AIP participated this year, both in person in DC, Michigan, and then

virtually all across the country, and we'll share what it was like to see

the community come together in person around awareness, advocacy, and support.

And finally, Jamie Nicole Martin is coming back to update us on the work

of the AIP BIPOC Network, including some of the events from this year and

what the organization has coming next.

Before we dive in, a quick reminder that this podcast is intended for educational

and informational purposes only.

Let's start with our research update with Sybil Cooper, PhD. And for this

update, we are actually going to talk about research that hits very

close to home for the AIP community.

Earlier this year, I interviewed New Zealand researcher and

nutritionist Julianne Taylor about the first AIP pilot intervention in

people with rheumatoid arthritis.

Now, another paper from her research has been published, and

this one asks a different and incredibly important question.

Instead of simply asking what happened to participants' symptoms during the

intervention, the research team asked, "What was it actually like to do AIP?"

Julianne and her team interviewed the nine participants who completed the

AIP intervention immediately afterward, and then came back and interviewed

them all again one year later.

That gives us a really interesting window into what helped people make

such a substantial dietary change, what made it difficult, how they

navigated reintroductions, and perhaps most importantly, what actually

stuck once the study was over and that formal support disappeared.

There are some really interesting implications here for how we support

people using AIP today, so we're going to get Sybil on the line.

Hi, Sybil.

Welcome back!

Sybil Cooper, PhD: Hi, Mickey.

I'm so glad to be here.

I am really excited to talk about this study with you because

it gives us a very different take than we usually get from dietary research.

And for everybody listening, if you want to read the study for yourself,

which I highly recommend, it's titled "Exploring Participant Experiences

With the Autoimmune Protocol Diet in Rheumatoid Arthritis: A Longitudinal

Qualitative Study", and that is in The Journal of Nutritional Sciences.

I'm going to place a link in the show notes if you'd like to check it out,

and it is led by Julianne Taylor, who you have heard from earlier this year.

But I just want to mention that so that anybody who wants to go download that, it

is free and open access, which we love.

So Sybil, before we get into the findings, can you explain what qualitative

research is and how it differs from the kind of quantitative outcomes

that people might be more accustomed to seeing in, like, a clinical trial?

Sybil Cooper, PhD: Mm-hmm.

Yeah, typically we're looking at numbers or quantifying pain

on a number scale so that we can run statistics on those numbers.

We can get a feel for how robust the data is.

Recently there was this study looking at the volume changes

in the thyroid with AIP.

That would be quantitative.

Looking at reduction in TSH or antibodies, various inflammation markers would all

be types of quantitative data that we would see in clinical trials, as opposed

to a qualitative study like this, where we're actually assessing the experiences

of the participants and then looking at the themes and patterns that evolve.

And so we can then begin to group those to further inform

the next phase of the research.

Yeah, that's a really important distinction, especially for

autoimmune patients, because so much of what we experience isn't a observable

number on, like, a lab report, right?

One of the things that really stood out to me in this study was talking

about how much work participants described the initial transition.

So they did AIP, but doing the meal planning, the cooking, maybe

sourcing ingredients, what did you take away from the challenges that

they reported in the write-up?

Sybil Cooper, PhD: The challenges were like everything that we've

seen in our own AIP clients.

Honestly, nothing was very surprising, and I've actually been on the receiving

end of that, in speaking with my endocrinologist, and he's basically, "You

just need to eliminate, you know, breads and glutens and cookie, all dairy, no

alcohol," but no guidance on how to do it.

And I think that lack of appreciation of how challenging it can be.

So we saw that and how it played out in the data, in their reported experiences

as far as just the cognitive load in making such a change is significant.

Particularly autoimmune disease, a lot of people are dealing with brain fog.

Right?

And also how important that secondary support is from others in the

household as well as, you know, friends and family that they may be

just having social time together.

And so all of those things were challenges that as coaches we

have to navigate with our clients.

Yeah, I would agree with you.

Definitely was not surprising the challenges that were reported, and also

not surprising that it was reported to be highest right at the beginning, and

that it actually went down quite a bit,

Sybil Cooper, PhD: Mm-hmm

that we see all the time.

Our friend Sarah Ballantyne, I remember her always saying in the

beginning, in the early days, "It's only effort until it's a routine,"

Sybil Cooper, PhD: Exactly.

comes through in some of this.

So on the flip side of that, the study identified some clear

things that helped people succeed.

You already mentioned a couple of them.

Maybe professional guidance, practical resources, accountability, that

household support, peer connection.

As an AIP Certified Coach yourself, did anything about those findings

surprise you, or do you have anything more to say on that?

Sybil Cooper, PhD: One thing that really stood out and in comparison to one of the

other studies was that the face-to-face support seemed to be really valued.

And as they transitioned through COVID and going through all the virtual

online support, like they saw a marked difference between those two scenarios.

And as you know, many of the, the AIP Certified Coaches do function virtually.

So it actually gave me pause to think about how we can do more

in-person, AIP coaching just to, to help folks, be consistent.

Yeah, that's a really good observation.

I think everything, there was this phase where everything went virtual, and

then we were like, "Hey, wait a minute.

There are actually some things that are really productive to do

face-to-face, seeing a person in front of you and, and helping them in that.

Sybil Cooper, PhD: Mm-hmm.

Mm-hmm.

Another, you know, interesting aspect was during COVID, most people

transitioned to more alcohol, more sweets, more treats, less activity, and

they actually had to do the opposite.

So I really applaud those participants 'cause they had that extra hurdle of the

I guess the stress of going through COVID.

But on the flip side, it was easier because they didn't

have the social demands either.

So it was kind of the…

a lot of eating out.

Yeah.

Sybil Cooper, PhD: Right.

On how you look at it, I know in my practice I had people on both

ends of the spectrum, some people who felt like during COVID it was easy to focus on

their health, and other people who felt it was just so much cognitive stress g-

Sybil Cooper, PhD: Mm-hmm

us all just trying to go through this together that

it was really distracting and hard.

Sybil Cooper, PhD: Mm-hmm.

Thought the one-year follow-up was fascinating, and that's

something that we haven't had with any of the AIP studies that have happened before.

So all of the other studies have been pilot studies where people did

the elimination phase, everything was measured, and then they were

just kind of sent on their way.

We don't really know what happened in terms of reintroduction.

But with this write-up, we get to find out what happens after one year, and

most of those participants weren't following the elimination, which is

exactly what we would want, right?

Sybil Cooper, PhD: Exactly.

But many of them had retained

some of those meaningful changes that they made from AIP.

So tell us a little bit about what their diets looked like a year later, and what

it tells us about how we might be able to define long-term success with AIP.

Sybil Cooper, PhD: Mm-hmm.

Yeah, I think the key for this one was, A, they weren't told that they

were going to be assessed a year later, so they were truly just, you know,

studies ended, on their own, right?

And B, there was no ongoing support either.

So some of the other studies had ongoing supports and check-in, which I think

knowing that's on the horizon has the tendency to modify behavior, right?

And I always tell people no two AIP journeys are the same, and we saw that in

these participants where some reintroduced the foods that they missed the most,

eggs, chocolate, you know, some alcohol.

Some stayed on strict AIP a little bit longer.

Others just like dove right in because I think maybe it was right before

the holidays when they finished, you know, like dove right in and

saw a return of their symptoms and then worked backwards to figure out,

"Okay, what foods can I eliminate?"

And so, I think most of the participants fell somewhere in the

middle of their, their, you know, pre-study diet versus strict AIP.

They figured out what foods helped them to feel their best, and it was really

empowering to see so many of the quotes.

And I really encourage everyone to go to read the paper that it was really

the best that they had ever felt.

And, you know, to note, all of the participants maintained

their medication regimen.

So this is benefits that they're receiving on top of their medications,

giving them that full quality of life.

So it's not an either/or, it's often an and.

Yeah.

Thank you for acknowledging that.

I was really excited to see both the people reintroduce foods, and what was

documented in the study is very similar to what we see happening in the real

world, which reintroductions are hard, and some people do it in a messier way,

and some people do it in a structured way.

But it seemed like this group, they kind of did it in a bunch of different ways.

Sybil Cooper, PhD: Mm-hmm.

Did seem like the participants learned a lot about what

foods caused them issues and were able to integrate that in a positive way.

And

Sybil Cooper, PhD: Mm-hmm

instead of just living in elimination forever, which is something

we don't recommend, it's really great to have some research that kind of shows what

happens to a group of people when they go through this, and that the benefits

lasted, which is really important.

A year is, is a long time, but it is good to see what happened to this group.

Sybil Cooper, PhD: Mm-hmm.

so.

Sybil Cooper, PhD: I loved how in the paper they talked about the elimination

reintroduction approach, 'cause I think it puts equal emphasis on the

elimination and the reintroduction as opposed to saying an AIP diet.

So many people come to us, and they went on AIP and found a cessation

of symptoms, and it's like a year or two later and they're still on

this, you know, restrictive diet, missing the whole reintroduction part.

Because I think that requires some education, you know, around that.

But then also addressing there were so many positive but also

keeping the negatives in there with guilt of not doing it perfectly.

Mm-hmm.

Sybil Cooper, PhD: They had that added incentive of being part of a study and

really wanting to do it justice, you know?

Hmm.

Sybil Cooper, PhD: There's some parts of the study that aren't applicable to just

AIP out in the wild, which I think is very useful information for us to know

especially going forward and how to help the average person be successful with AIP.

And sometimes these papers are great to give to your loved ones

to get them on board, right?

You know, to get that support, seek outside guidance and be, you know,

from a nutritionist, an AIP Certified Coach, a dietician, as well as

looking at the downsides and just figuring out how to shore those up.

So that's one of our roles as coaches is, one of the first questions we ask,

like, "What is your life like for the next three months?" If you're traveling

or your son or daughter is having a baby, or you have young kids or, someone's going

off to college and your life is just full of a lot of stress, that may not be the

best time to begin you know, an AIP diet.

And so I think being self-reflective of like, is this a good time?

What are the challenges going to be, and how can I best mitigate those?

And knowing that no AIP path is going to be 100% perfect, and it doesn't

need to be to be successful, and we saw that in these participants, right?

You don't have to be perfect to have a much better quality of life.

So thank you so much, Sybil, for your insights.

Sybil Cooper, PhD: Oh, thank you so much.

I love discussing these research papers with you and your audience.

So I think the idea of support is a perfect bridge into the rest

of today's episode, because whether we're talking about making a major dietary

change, advocating for better autoimmune care, or simply finding other people who

understand what living with autoimmune disease is like, community matters.

And this fall, there was a pretty amazing opportunity to experience that in person.

This September, the Autoimmune Association held its second annual Hope

Journey Walk with in-person events in Washington, DC, and Clarkson, Michigan,

along with a walk-anywhere option for people participating around the country.

Like last year, the AIP community was represented.

We created Team AIP, invited AIP Certified Coaches and members of the

broader community to participate, and had groups represented in

both of the in-person walks.

And actually, I also walked virtually here in Portland.

Jaime Hartman was there at the Washington, DC walk and helped make

all of the Team AIP side of that happen, so I want to bring her on

to recap that experience with me.

Jamie, welcome back.

Good to be back!

We have talked so much over the years about how

big the AIP community has become, especially online, but this was a

really special opportunity to actually show up together in person, right?

Can you tell us, for somebody who wasn't there, can you describe the Hope

Journey Walk and what the day was like?

So I think you said this already in your intro, but

the Hope Journey Walk was put on by the Autoimmune Association.

For anybody who isn't familiar with what they do, they are the leading organization

in the United States for autoimmune disease research, advocacy, awareness,

really a great organization, and of course, we always want to support what

they do, and I'll talk more about why, but just wanted to be out there in support.

The event that they put on was just, was, was incredible.

It was the second year that they've done it, and I live in the Washington,

DC area, and it's always fun for me to participate in events like this

'cause I get to kind of see it through the eyes of people who don't live

there and maybe have never even been.

So it's a really beautiful location.

We started at the wharf, which, for people who are not aware of where that is in

DC, that's really close to the monuments.

They had a great indoor location where we had breakfast, which was provided

by our dear friend and colleague, Marie-Noelle Marquis of Urban AIP.

It was delicious.

She really outdid herself, and I'll just really want to put a plug in here for her

and her team's efforts because anybody who knows where Urban AIP is physically

located in the world, that's Los Angeles, and this event was in Washington, DC.

So they had to go through a lot of work to get the food there

and themselves and prepare such a great, a great spread for us.

But it was a great location.

They had also face painting, and you could make a friendship

bracelet and just meet other people.

So even beyond meeting other AIP people, it was just great to see

other people who are out there trying to raise awareness and help fund

research for autoimmune disease.

And then after the breakfast, we had the opportunity to walk.

You could walk one mile, two miles, or you could do the full loop, which took

us all the way around the Tidal Basin.

And for people who are familiar with Washington, DC, that's a really iconic

part of the city where you get to see all the monuments, and you really

have a great experience up close with everything that we have to offer here.

And it was just a great opportunity to connect with other people

and to feel really supported.

I'd say the mood overall was just very optimistic, very

enthusiastic, very supportive.

They had people cheering.

They had signs up.

Just really, really empowering for people who participated.

Oh, I love that.

And I was able to make it last year.

I had so much fun, even though last year we didn't have the best weather

No, we didn't.

How was weather this year?

Oh my gosh.

'Cause I saw some pictures.

It was, it was incredible.

We had perfect weather this year.

It was a gorgeous day.

We had no rain.

We had just beautiful, clear skies and a moderate temperature,

so it was very, very nice.

I love that, and I love hearing about all the excitement

and connection that was able to be had, 'cause with autoimmune disease,

it's usually we're reduced to being sad and alone and nobody understanding.

So it sounds like it was a joyful opportunity to raise awareness

and support each other in that.

So this was the second year that Team AIP participated as a

fundraising and a walking group.

Why did it feel important for us to have a visible AIP presence at an event

representing the broader AIP community?

It goes both ways.

You know, it was helpful for us to be there to support just what the

Autoimmune Association does, because it's work that personally, I'll just

speak for myself, I really believe in and think is just incredibly important,

and they've really done some amazing things over the last few years that

I've been more involved with them.

So I just really thought it was important for us to support what they do.

But it's also really important for us to be there in order to help

spread awareness, to be in places where other people who have, have

autoimmune concerns are present.

Not everybody knows about AIP, and so for us, being there and being

visible and participating in all of the ways that, that we can, it helps

to make more people aware of AIP and to dispel a lot of the common

misconceptions that people have about AIP.

A lot of people feel like AIP, if they hear about it, they just

hear about all the foods you can't eat, and they kind of stop there.

And so it was a really helpful one for us to be there and talk about it, to have

some AIP-compliant food there to show, like, it's delicious, and to also really

dispel some of those myths that it's just about not eating certain foods, but it's

more about finding out what works for you, and that it's a whole framework.

It's about lifestyle.

It's about nutrient density.

It's about all of the things that we all talk about all the time on

your podcast and in other avenues.

But it's something that it, it is important for the community to understand,

and to, again, put on that, like, positive face about it, that supportive face.

I should add, in addition to Urban AIP being there, sharing food, there were a

couple other AIP-friendly food businesses that contributed some of their products

to making that event a success, so I'm going to give a little shout-out to them.

Get Saucy participated, really delicious sauces.

Coyotas, who, who creates a burrito wrap, so we had some AIP-friendly chicken

breakfast burritos that were amazing.

People couldn't believe that they were anything other

than just the regular thing.

And then Eat Gangster contributed their mixes for making some little banana

bread muffins, which were amazing.

I love that, and I love that the AIP food businesses really showed

up to create this abundance of ideas because I think the broader autoimmune

community, it is kind of a hard thing to get your head around the exclusions, but

then when you show up and there's all this beautiful, abundant food you might

be like, "Oh my gosh, I might actually be

Yeah, exactly

So, props to all of them for showing up and supporting the

awareness campaign, and the walk and

Mm-hmm

So what stood out to you about some of the people that you met?

Were there any conversations or moments from the day that stood out to you?

Yeah, what really stood out to me again was this idea of it

being optimistic and supportive, and the broader, collection of walkers

included people who, like us, live with autoimmune disease, but also

a lot of family support network, people who are supportive of others.

And so there were a lot of folks there from across that spectrum.

We also had researchers represented there, Dr. Victoria Shanmugam from the

Office of Autoimmune Disease Research at the NIH was there, and I know your

listeners have virtually met her before 'cause you interviewed her, and she is

a big fan and supporter of Mickey's, so it's great to connect those.

So she was there with her family.

And then within the sort of Team AIP ecosystem, we got to meet some of the

people who are using AIP, who have worked with AIP Certified Coaches.

And one particular contact I thought was really interesting was a long

conversation I had with the partner of someone who is living with an

undiagnosed autoimmune condition.

And that really struck me as an important aspect of something like the Autoimmune

Association Walk because, for many people, we center our identity and our

experience of living with autoimmune disease around our specific diagnosis.

And as we're learning more and more, not all autoimmune

conditions fit into neat boxes.

And so it was really nice to have that connection there and to have this person

and their family feel like they have a home, not only in AIP, but also in

the whole broader autoimmune community.

Hmm.

That's a really, a really good point, and actually, I just hosted a community

update in the virtual community, the AIP community that everybody, hopefully

you guys know about, and we actually had a whole collection in the last meetup

of undiagnosed autoimmune patients, and they were able to have a room to

Mm-hmm

So I love that thinking about that way we can expand

the community, and of course, the Autoimmune Association, we don't

even, haven't identified probably

Right

diseases that are out there, which is what

makes this work so important.

So the walk is obviously fun and community-building,

but it is also a fundraiser

Mm-hmm

supporting the Autoimmune Association's work in

research, advocacy, patient support.

Why is that broader work something that we want the AIP community to be connected to?

Yeah.

You know, traditionally, I think people have thought of the Autoimmune Protocol as

a diet, and maybe as a lifestyle approach as well, to self-managing their disease.

And a lot of people have thought that that sits in opposition to conventional

medical approaches to managing disease.

You know, but ultimately, I really see it as one road, one journey.

We're both walking the same road for the same people.

The Autoimmune Association and all of the research that is done with

their support and their awareness and advocacy work, as well as what we're

doing in the AIP community, it isn't something that needs to feel like

it's in opposition to each other.

So really participating as Team AIP helps our community be visible in

that space where, you know, research and advocacy and lived experience are

all pulling in the same direction, and that's what's really the most

important part of everything that we do.

Jaime, Thank you.

It was really special getting to see this community represented.

I'm excited to find some ways for us to show up together beyond the internet.

I'm so sad that I wasn't able to participate, but I really appreciate

your recap and being with us.

My pleasure!

For our final update, we're staying with community, but looking

through a slightly different lens.

Jamie-Nicole Martin is the founder and CEO of the AIP BIPOC Network,

an organization we've been proud to collaborate with to make AIP education,

resources, and community more accessible.

They have had quite a busy year, including community events and fundraising,

and there is so much more coming.

So let's get Jamie on the line.

Jaime, Welcome back.

It feels like so much has happened since we talked in our quarter two update.

Jamie-Nicole Martin: Yes, It has.

There has been a lot going on with the AIP BIPOC network that

I'm excited to share with you.

To transition from Rock the Block, after that we have been doing lot of community

work, including sharing information on some of the changes that are coming.

We know a lot of people with chronic illness have Medicaid, have SNAP benefits.

Also the changes are impacting caregivers as well.

So making sure that the community is aware of those changes, and then also a

lot of what I have been focusing on is making sure we're being proactive as an

organization, anticipating those changes and then also having resources, whether

it be, partner resources or internal resources to kind of, I guess, lessen

the blow of everything that's going to be changing in regards to insurance, pharmacy

benefits, food benefits next year.

And in addition to that, not so much community based because this was something

that we were doing nationwide but yet also worldwide, we had a autoimmune and

menopause study that I partnered with, other organizations to complete and we

are still analyzing the data on that, but have learned so much about the correlation

or the changes you may experience, with perimenopause and menopause when

you also have autoimmune disease.

Yeah, I was actually really honored to be a participant

in the study that you partnered with.

So, thank you for that work because we have been talking on the podcast,

everybody knows this, there is absolutely no research on the intersection between

autoimmune disease and perimenopause.

So on top of really helping people understand their benefits, which by

the way, if anybody doesn't know, there are community resources like the

AIP BIPOC network that can help you make the best of your resource access.

That isn't something that you have to figure out on your own.

So thank you so much, Jamie, for that work and for letting people know that

they can reach out to you guys and plug in and get some of that support

to figure out if their access to food or medication or insurance is changing.

You guys are helping everybody understand that.

Can you tell us about any of the community events or anything that

you've been a part of this year?

Jamie-Nicole Martin: Absolutely.

Well, on a recurring basis, we're always out at, the multi-service

centers here in Houston, but also partnering with other organizations.

So one of the big events that we partnered with was the Abilities Expo.

And that really opened my eyes to see what the community needs were.

Being out and talking to people, not just with autoimmune disease, but with chronic

illness, with mobility issues, because we face that with autoimmune disease as well.

Whether it be access in their kitchen, because sometimes

we don't think about that.

We think about access as a, a ramp, but how do I get around my house?

How do I make things more accessible?

And then connecting with other partners who actually help provide

those resources, sometimes for free, to the chronic illness community.

We were out there for three days and again, giving out information on both

Medicare and Medicaid, food assistance resources, and making sure that they

were connected to us here in Houston.

And not just patients, caregivers as well.

And then also too, providing resources to the family, because sometimes

and oftentimes in families, you have one person that has chronic illness,

but the entire family is impacted.

So it really did open our eyes, number one, to what the community needs.

Sometimes we're behind the computer.

Things are changing rapidly this year.

We just talked about insurance is going to be changing rapidly.

Food benefits and what you receive is changing.

Everything is changing, it seems though, at the same time, which can

be an extra burden, which I know it is an extra burden, when you already

are faced with dealing with doctor's appointments and your chronic illness.

And so what we've been focusing on in general is making sure

that people are connected.

So whether you're dealing with menopause, insurance, aging, managing multiple

chronic conditions, trying to connect those dots, and a big part of that is

getting out into the community, seeing what they need, and then also trying

to remove those barriers to access.

Jaime, when you're actually out at these events and

talking to people face-to-face, what are you hearing from the

autoimmune community right now?

I know you mentioned kind of inner family support and benefit access,

but is there anything else that we haven't talked about that's coming up?

Jamie-Nicole Martin: One of the things that I've found int- well, not really

interesting because when you're in it, been my life for quite some time, you

see things from a different perspective.

So one of the things, it wasn't out in the community per se, but our online

community with our Eve research project for menopause, is that people have

information, but they don't connect it to autoimmune disease at all.

Whether it be how they feel at different times of the year, whether

it be a particular symptom that runs in their family, they don't have the

community to talk to, kind of have an understanding of what it could

possibly be, to even go into the doctor to explain what they're experiencing

because they don't see that connection.

At different points of your life, whether it be whether you're first

diagnosed or you've already been diagnosed with autoimmune disease

and now you have menopause, things change, and what you need and the

resources that you need change.

So connecting people to those resources, even when they don't know that they

need them, is one of the things that I'm going to be working on in 2027.

These were people who were again, diagnosed.

They may have even had a functional doctor, but because they don't know

how to connect those pieces, they don't know the symptoms, they don't

know the changes that may happen with weather and how that may be connected.

For example, you were talking about menopause, and you've been having

those conversations on your podcast.

I am just now realizing the connection with histamine in menopause and the

connection with the weather also and the barometric pressure in menopause.

So I always make that connection with the weather with my autoimmune

disease, but now that I'm going through menopause, I didn't know that, and it

was conversations I had with community, even though I do this work that was so

helpful with me managing my own symptoms.

So again, hearing those stories of people just trying to understand what's

going on, and not only that, them hearing other people and having that

light bulb go off, it reiterated the importance of the work that we do and

the information that we share and getting that information to those communities

who may not know that they need it.

Yeah.

Community is so important, and especially when we're in this uncharted territory,

not just with autoimmune disease, not just with perimenopause and menopause,

but, like, combine it all, we really have to support each other and share stories.

I mean, that's a big part of why I'm doing what I'm doing, is just to put it

out there so that people can make those connections in their own life, but then

also, spoiler alert, it's really about helping the next person too, you know?

Which is a I know, Jamie, you and I are just really into this together.

But I love that that is your big insight.

'Cause that's definitely a shared goal as well.

So finally, you know, we're coming up on the end of the year.

Talk to us about what's next.

What should people be watching for from the AIP BIPOC Network, and where

can they follow along, participate, and how can they support you?

Jamie-Nicole Martin: Absolutely.

Make sure that you go to our website, aipbipoc.org.

We're in the process, because of the first study, and people's "aha" moments,

wanting us to redo the study, by season because they've realized that the seasonal

changes impact their symptoms, and they're eager to learn more and to make those

connections by tracking their symptoms.

In addition to that, we're also working on a comprehensive resource network,

based on access, based on inclusion, based on prevention, based on knowledge.

I always get surprised, again because I'm in it, of how many people don't

know about autoimmune wellness and the Autoimmune Wellness Podcast, and,

and how food impacts their symptoms.

I know with me it completely changed my life, and I don't know what I would

personally have done, over the past few years without having that knowledge.

So making sure that people are aware of all of the resources that are

out there but in a strategic way.

In the meantime, they can always email me if we don't have it up on

our site, if it's not up on our blog.

We have several resources in our back pocket.

For example, the Patient Advocate Network where you can get, help

with your prescription co-pays and a plethora of other things that you

may need, on your wellness journey.

Thank you so much, Jaime, for being here and

sharing all of this with us.

And you guys really take her up on plugging into the AIP BIPOC

network if you need the help.

It's a really incredible resource for the community, and I hope that

you guys can use it to help make the best out of your healing journey.

And thank you so much, Jaime, for being here with us.

Jamie-Nicole Martin: Thank You.

And that brings us to the end of our quarter four community update,

and amazingly, the end of episode 100.

When I launched the Autoimmune Wellness Podcast this year, one of my goals

was to create a place where we could talk about autoimmune wellness from

as many different angles as possible, not just food, or research, or even

individual healing stories, but this bigger ecosystem that all of us living

with autoimmune disease are part of.

And I think the conversations today really capture that.

We're seeing researchers ask not only whether an intervention works, but

what patients actually experience when they try to implement it.

We're seeing people across the autoimmune community physically come together to

raise awareness and support organizations pushing research and advocacy.

And we're seeing grassroots organizations build communities that help make those

resources accessible to everyone.

And none of these things happen independently.

Research informs practice.

Advocacy creates opportunities for better research and care.

And community is often what helps people actually access and use all of it.

So as we tie up a nice little bow on episode 100, I want to say thank you

to Sybil, Jaime, and Jamie-Nicole for continuing to bring their perspectives

to these quarterly conversations, and thank you to everybody who has listened,

shared the episodes, sent them to friends, asked great questions, and helped us

rebuild this podcast over the last year.

We will be back next year to keep following what's happening

across autoimmune research, advocacy, and community.

And until then, take good care, and I will see you next time.