August 17, 2025 • 33 mins
For those living with rheumatic diseases, finding your voice can be as powerful as finding the right treatment. In this candid roundtable conversation, six extraordinary patient advocates—Chelsea, Stasha, Nya, Tanya, Jen, and Cheryl—pull back the curtain on their journeys from diagnosis to becoming Rheum Champions with the Rheumatology Research Foundation.
Each champion brings a unique perspective to the table, having navigated conditions ranging from rheumatoid arthritis and lupus to Hashimoto's thyroiditis and PCOS. Their paths to advocacy began in different ways—through therapist recommendations during pandemic isolation, chance videos that caught attention, or the realization that their professional knowledge could help others struggling with the same conditions. What unites them is the courage to transform personal struggles into public purpose.
The conversation takes us behind the scenes of the 2025 Rheumatology Research Foundation Investigators Meeting, revealing a surprisingly intimate environment where patients, researchers, and clinicians connect as equals. As Nya shares, "It helps us get to know rheumatologists as people more than just physicians." These connections humanize research and remind scientists of the lives their work ultimately touches. Jen describes the conference as "an antidote to hopelessness," where passionate researchers remain engaged and collaborative even after long days.
Beyond the formal advocacy work, these champions highlight how the community becomes a powerful healing force. Whether interviewing researchers together, sharing favorite books for an impromptu book club, or simply understanding each other's dietary restrictions without explanation, these connections remind them they're "human beings alongside everything," as Cheryl beautifully puts it.
Ready to transform your own experience into advocacy? The champions explain that becoming a Rheum Champion requires just a simple five-minute application. As Jen emphasizes, "It's not about having all the answers—it's about wanting to make a difference."
Apply to be a #RheumChampion today!
#RHEUMCHAMPION - The Rheumatology Lab
Jen Weaver:
https://www.instagram.com/gracefully_jen?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==
Cherly Crow:
https://www.instagram.com/arthritis_life_cheryl?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi everyone and welcome to a very special
episode on our podcast.
Today we're pulling back thecurtain for a Room.
Champions Tell All.
We're joined by some incrediblyamazing advocates from across
the country, each living withrheumatic diseases and using
their voices to championresearch, awareness and, of
(00:22):
course, change.
In this heartfelt roundtable,you will hear what inspired us
to step into this role and ourbiggest takeaways from 2025, the
Rheumatology InvestigatorsMeeting, and why community has
become our greatest strength.
From powerful stories tounforgettable friendships, this
episode is a reminder that whenpatients lead, progress follows.
(00:44):
So hello everyone.
Hi, good to see you, hello.
Speaker 2 (00:49):
When we say that we are RIM champions, that is an
initiative from this reallygreat nonprofit organization
called the Rheumatology ResearchFoundation.
And they not only are anonprofit that funds research to
help, of course, find bettertreatments and potential cures
and effective treatments forrheumatic diseases.
(01:10):
They actually also help improvethe workforce because, as we
all know, there are long, longwaiting lists.
It's really hard to get into arheumatologist sometimes.
So they also fund initiativesto try to convince more doctors
to become rheumatologists, whichis really fun.
So what they have done as anonprofit is they've wanted to
(01:31):
amplify the patient voice andthen maybe start including
patient stories and utilizingall of our connections on social
media to help spread the wordabout all the great work that
they're doing as well.
So every year they havesomething called the
investigators meeting, where allof the researchers who they've
funded come together and giveupdates on their research, and
we all attended that in May of2025 as the room champions and
(01:55):
helped again share on our socialmedia all these interesting
updates.
I think we could just start byintroducing ourselves.
I am.
Speaker 3 (02:03):
Chelsea.
I'm from Fort Worth, texas, andI was diagnosed with rheumatoid
arthritis in 19.
And then, a couple years later,I was diagnosed with scleritis
and recently was diagnosed withPCOS.
This stands for polycysticovarian syndrome, and it really
affects hormones and, from whatI was told, it can be due to my
(02:27):
autoimmune disorder.
I'm still learning about it.
It's still a fresh diagnosis.
Speaker 4 (02:33):
Hi, I am Stasha Parker.
I am from the great state ofMaine, on the northeastern coast
.
I was first diagnosed with PCOS, then Hashimoto's and
eventually rheumatoid arthritis,and that's the one that really
took me out of the game and setme on this path.
Speaker 5 (02:52):
Hello, my name is Nya Sims.
I am from Tifton, Georgia, andI was diagnosed with lupus and
rheumatoid arthritis in 2012.
Speaker 6 (03:01):
Hey everyone.
So my name is Tanya.
I was diagnosed with my firstautoimmune disease when I was 12
years old, but lupus was mymost recent diagnosis, which was
actually even more than adecade ago, 11 years ago in my
late 20s, and I am from NorthCarolina and currently live here
.
Speaker 1 (03:19):
Hi everyone.
I'm Jen Weaver, and in 2012, Iwas diagnosed with rheumatoid
arthritis, followed by adiagnosis of pustular psoriasis
in 2017.
And in 2024, I was diagnosedwith alopecia areata, and I live
in.
Speaker 2 (03:39):
Washington State.
My name is Cheryl Crow.
I was diagnosed with rheumatoidarthritis and gastroparesis in
the year 2023.
I live in the greater Seattlearea and I'm also an
occupational therapist, which isjust a little fun fact about me
.
So the first thing we wanted to, after introducing ourselves,
share what was something thatinspired you to share your story
(04:03):
more publicly as a roomchampion.
That we all kind of talkedabout a little bit at the
conference, that there can be alittle bit of trepidation the
first time you start sharingpublicly and social.
You know, on social mediaespecially, there can be a lot
of fears about what are peoplegoing to say and stuff like that
.
Speaker 3 (04:23):
I decided to start sharing my story a couple years
after my diagnosis.
So it was around COVID timethat I was stuck at home.
I had stopped working aroundthat time just due to my
autoimmune disorder and alsobecause of COVID.
(04:44):
So I was home for a lot of mynewly diagnosis and I had been
seeing a therapist during thattime and she had encouraged me
to try to find a support groupfor others that are on the same
journey as me, and I couldn'tfind any locally, obviously
(05:07):
because of COVID and because itis rare to find in-person
support groups for chronicillness.
And so she encouraged me toshare my story on my social
media and at first I was veryhesitant to do that because I
didn't know what it was going tolook like if people were going
(05:27):
to be kind just the typicalfears when starting to put your
life and personal things on forthe public to criticize or
comment on.
The first two people that Ifollowed was Cheryl and Another
Day with RA Allie.
Those were my very first twopeople that I followed that had
(05:49):
RA and they really encouraged meto just continue sharing my
story.
So that kind of pushed me intofinding Meg, which is it's Meg
Fitness.
Through Meg I found Jenny, andthen it snowballed after that,
which is nice, because now Ihave like a little community of
people that I've gotten to knowthese past few years, and
(06:10):
through all of these wonderfulpeople I was able to connect
with the room champions andapply to become a room champion.
Jenny encouraged me to do thatand share my story there, and
then after that encouraged me todo that and share my story
there, and then after that I wasable to be invited to be a part
of the investigators meeting.
So that's kind of how it allhappened.
Speaker 2 (06:32):
It's exciting.
I think it's so beautiful thatyour doctor encouraged you to
share your story, because Ioften hear the opposite.
The doctor say don't go onsocial media, you're going to
get scared, right?
Speaker 3 (06:42):
Yes, yes, I am grateful for her because she
said you know, with boundaries,you're going to get scared,
right?
Yes?
Yes, I am grateful for herbecause she said you know, with
boundaries, we're going to shareyour story, but also let's make
sure that we're finding peoplethat are encouraging and that
will help you to grow throughthis season and not scare you.
It really did take a little bitof time to find the right
(07:04):
people for me, and once I did,they are so inviting and
introduced me to other people.
It actually, honestly, was veryhelpful.
Speaker 4 (07:13):
I actually started out not really sharing my story.
I had been doing a lot ofresearch and trying a lot of
different health changes and Istarted out by just writing
about good health things thatyou could do to make yourself
feel better, no matter what washappening with you.
And then a really good friend ofmine suggested that maybe I
(07:34):
should share my own personalstory because she told me I was
inspiring.
And I didn't believe her at all.
But I started sharing my storyanyway because I really enjoy
writing and I find it verytherapeutic to write down what's
going on.
And from there I was invited tocontribute my story and keeping
(07:55):
it real with arthritis, invitedto join the Room Champion
project when it launched, theperson who created it reached
out and that was really greatand invited to join Impact with
Room Research kind of rightaround the same time.
When I looked at what they didand saw that they helped us not
(08:16):
just by doing the research,which I find exciting as a
scientist myself, but also thatthey have the aim to improve
access to care, I knew I wasimmediately sold.
I had to be involved with thisorganization.
Speaker 5 (08:31):
As I mentioned before , I was diagnosed in 2012 and I
was 12 years old.
Me and my family had to drivefrom Tifton, which is a rural
community, to Augusta, which wasabout three hours away for me,
to receive treatment, and that'swhat started my path of
advocacy and speaking out andtelling about my journey.
I see that the RheumatologyResearch Foundation had reposted
(08:53):
Cheryl and Jenny's videos fromthe conference last year, from
the investigators meeting lastyear.
I was like how do I apply 2023,at that time, I don't think
like there were any initiativesgoing on.
A few months ago, I receivedthe email that I was invited to
come to the Seattle conferenceand I was just so excited to be
able to share my voice withothers again because I already
(09:15):
done it at previous, like ACRs,the ACR conference or the
American College of Rheumatologyconference about three years in
a row now I've been doing that.
So it was exciting to seerheumatology conference about
three years in a row now I'vebeen doing that.
So it was exciting to seerheumatology from a different
perspective at the investigatorsmeeting and see how researchers
are actually doing.
Speaker 6 (09:34):
I was diagnosed quite a while ago, but I had already
been working as a dietician forquite a few years when I was
diagnosed.
So rather, my story wasn't tofind support, unfortunately
which I should have done it isalways a good idea to find
support but I figured, okay,well, at least I have a master's
degree in this field andexperience, I'm gonna figure out
(09:57):
the diet and the lifestyle.
And then I did figure out whathelped me feel a lot better.
So then I kind of put the lupuson the back burner.
Okay, I've got that figured out, I can live my life and not
worry about it.
So so much.
But several years later, I spentprobably too much time online
on span of a couple months andrealized and there were so many
(10:19):
people with lupus that werereally struggling, that were
sharing their stories and feltawful and using my background as
a dietician and also my livedexperience as someone with many
autoimmune diseases, I finallyhad the light bulb moment of
wait a minute.
I can help a lot of other peoplewith the knowledge that I've
(10:40):
figured out the research thatalready exists, but people just
don't know how to implement itin their lives, because you can
read a research study, butunless you're a dietitian, you
have a background in science.
Many people would find itdifficult to start putting it in
place.
So that was what inspired me toshare my story and also create
my private practice that focuseson autoimmune disease.
(11:01):
And then, when it came tobecoming a room champion, I saw
it as an opportunity to continueto spread awareness.
Obviously, the RheumatologyResearch Foundation is doing so
much good, not only for helpingrheumatologists or medical
doctors become rheumatologistsin underserved areas, but the
research itself is servingeveryone in every community
(11:25):
related to rheumatology, lupus,rheumatoid arthritis and so many
other conditions.
It really felt like a wonderfulplace to continue to use my
voice and help others.
Speaker 1 (11:36):
So my story is a little bit like Tanya.
I wasn't joining for supportbecause I'd already gone through
everything.
I wanted to use my voice tosupport others.
But I love the fact that itintroduced me to amazing people
like you and I joined inCheryl's Room to Thrive, even
though I didn't necessarily needit, but I liked being part of
(11:58):
the community and being anothervoice, another voice of support
and connection.
I've met so many incrediblepeople.
That's how I met Chelsea,because I do a support group
with Megan from it's Meg'sFitness.
It kind of started on a whim.
One day I was like, hey,there's people out there that
are like me that can use supportand love.
Why not me?
I can do that.
(12:18):
Next thing you know all theseopportunities of ways to
advocate and to share our voice.
The room champion was one ofthem and you know they dropped
into my DMs one day and said,hey, you know we think you'd be
a perfect fit for this.
What do you think?
I was like wow, I feel honored.
How can I help support yourmission more?
And now I've gotten to attend acouple of things and it's
(12:39):
amazing.
It's amazing to see that theyreally genuinely care and want
to help support us and see usdoing better, and they're okay
with sharing what they'reworking on with us as well.
Speaker 2 (12:51):
So that's kind of where I'm at, turning our pain
into purpose, which I don't takecredit for.
That phrase I heard it once,but I just love it.
It's so poetic.
So thank you whoever coinedthat phrase.
How I got into sharing my storypublicly, actually it's probably
so random.
I don't know if there's anyoneelse who started their arthritis
advocacy journey this way, butI had actually made a video for
(13:14):
a swing dance video contest andI was thinking what's my unique
angle with swing dancing?
Well, I had gotten diagnosedsix years earlier with
rheumatoid arthritis and so Iwas like let me make a video
about dancing with arthritis,like some of the things I do to
make sure that I can stillprotect my joints while dancing.
Well, little did I know thatthis video would be forwarded to
(13:35):
the Arthritis Foundation andthey would reach out to me and
say, hey, you look like somebodywho enjoys, you know, sharing
their voice.
And they asked me to speak at acouple events.
And one thing led to another.
And here I am now and it's just, I think.
Initially I was mostly afraidwhen I was sharing, thinking
(13:55):
about sharing publicly, I wasafraid that people would like
criticize my treatment choices,which has happened.
All the things I was afraid ofhave happened.
But the thing that makes it allworth it is that the positives
outweigh the negatives so muchwhen it comes to sharing your
story.
Like I have people saying whyare you taking those toxic
medications or something youknow?
(14:16):
If I do an injection video, butthen I also have for every one
comment I have saying that orsaying you shouldn't take that,
you should just do diet orsomething else or yoga, and
there's like 20 people who willsay, oh my gosh, I was so scared
to do my first injection andthen I saw your video and I felt
like I could do it too.
So anyway, it's taken me somany wonderful places and
(14:37):
becoming involved in theRheumatology Research Foundation
.
Honestly, I feel terrible sayingthis, but I had been a member
of the American College ofRheumatology and Association of
Rheumatology Professionals andwhenever I go to the conference
I would see this likerheumatology research thing.
I always just kind of walked byit because I was like I'm going
to go see something else.
Like in my head I just I waslike, well, that's for the
doctors, like that's not, likethey're working on that stuff.
(15:00):
But in my head I wasn't what amI going to do?
And even though I'm anoccupational therapist, it the
foundation really gives grantsto doctors.
And then I realized, duh, theyneed help with their public
relations sometimes, becauseresearchers are not, as we all
found, are not always gifted atthe sharing of their story.
Some of them are, some of themwere amazing dynamic presenters,
(15:23):
and others they're so cerebraland amazing in their own way.
I think we, as patients, who areused to maybe capturing
people's attention and providingpatient education online, they
were actually looking for helpfrom us to help spread the word
and get other people interestedin the foundation.
So, long story short, that'show I got involved.
(15:43):
But what keeps me involved isthe community is meeting all of
you, meeting the researchers andthe staff at the foundation.
I feel like I'm like making acommercial for them right now,
but seriously, they're like thenicest.
The nicest hardworking, mostpassionate people, and I've
worked with a lot of differentgroups and nonprofits.
I'm not comparing, I know I'mnot playing favorites, but I'm
just saying that I appreciatethe Rheumatology Research
(16:05):
Foundation a lot.
But back to everyone elsebecause this is a panel, not
just me on my soapbox what isone of the most important
takeaways from the 2025investigators meeting, and it
can be something that youlearned, maybe from the research
updates, or just a memory thatyou'll take with you.
Speaker 3 (16:22):
Yes.
So to kind of circle back onwhat you were saying about the
people that work for thefoundation, I genuinely feel
they are so compassionate witheveryone that they meet.
At least I felt that way at theinvestigators meeting because it
was my very first rheumatologyevent that I've attended, so I
(16:45):
didn't know what to expect whengoing, so I was very nervous
when I first got to Seattle.
But once I was able to meeteveryone that is a part of the
foundation and I saw how muchthey truly cared and are
passionate about rheumatology Idon't want to say change my
(17:05):
perspective, but it encouragedme and it made me feel I was
where I needed to be to helpbring change to rheumatology and
bring awareness to it.
I felt like the foundation doesa great job with that, and also
the fact that there were somany rheumatologists in that
room that are sharing theirresearch and how they're
(17:28):
impacting the rheumatology worldwas encouraging to me and
something that I took away from.
I left the event feelingencouraged by it, and I think
that is what stood out to me themost.
Being able to meet my onlinefriends in person was also a
memory that I won't forget.
Like it's just so nice tofinally see everybody and just
(17:50):
have these sweet conversationsin person.
Speaker 5 (17:54):
A memory that I will take away from the conference is
getting to meet and know all ofyou, because here in Atlanta I
don't have many rheumatologyfriends like friends who
actually deal with theserheumatic diseases every day.
So getting close forming bondswith y'all, like how we did our
activities and even learningfrom each of you.
I know I kept tapping on Jennyduring the conference like, can
(18:16):
you help me with this, can youhelp me with this?
But she was teaching me so muchand like learning how you all
create your content or like dodifferent things for your own
brands.
I feel like it was veryempowering to me that I need to
do better on my side and I feellike since the conference, I've
been doing a little better withactually putting advocacy stuff
out there, putting rheumatologystuff on my page, because I
(18:38):
would do it, but not asconsistently.
So I've been doing better,being more consistent.
Let's hope it stays that way.
And a takeaway from theconference or something I
noticed at the conference I feltthat the conference, like
Cheryl said, it was moreintimate.
So basically like it was a lotdifferent from ACR conferences.
At the ACR conferences I feelmore intimidated there than I
(19:01):
did here.
I felt more like that.
I felt that it was moreintimate and that we could
actually talk to the researcherson a personal level, like how
we got to interview them.
They were very open about theirresearch and also even when we
did the event I believe it wasthe second or third night when
we were all just standing at thetable just chatting with the
rheumatologist.
Like that was very nice andvery intimate and I felt like it
(19:23):
helps us get to know therheumatologist as people more
than just a physician.
They were telling us lifeexperiences and stuff.
So I really appreciated howintimate the conference was.
Speaker 6 (19:33):
So I did absolutely love the conference and all of
the research that was shared wasso impactful because you can
see the passion in the eyes ofthe researchers of.
Thank you so much thefoundation for giving me the
funding so that I could pursuethis question, and it ranged all
over the place, but all of themain goals were to improve
(19:56):
patient outcomes.
Whether it was figuring out avery, very specific part of a
protein or figuring out iftelehealth can be as helpful to
people as an in-personappointment, they all really
were so passionate about theirresearch and absolutely loved
sharing it with us, so that waswonderful.
But also I was just soimpressed with the foundation
(20:20):
and how their track record offiscal responsibility puts them.
I have the stats in the top0.5% of charities and in the
16th consecutive year of gettingthis four star rating, for
basically the money that theyuse is absolutely almost 100%
going towards the things thatthey say, so there's very little
(20:41):
waste.
They really are using thesedonations as best as possible to
help everyone.
Speaker 1 (20:47):
Of course, the memories of getting to spend
time with all of you can't beatthat.
That's incredible.
I miss you all.
I miss you all so much.
That was just a really fun weekof connection and shenanigans.
I'm glad you guys put up withall of my crazy ideas.
We had so much fun doing man onthe Street, I think at first a
(21:07):
few of them were kind of likewhat you want to do, what?
But some of them really gotinto it and had a lot of fun.
Then, of course, my other thingthat I want to bring up is
getting to talk to some of thepeople that I've kind of
fangirled over but was too shyto speak to last time, or
getting to talk to them and sayhey, guess what?
Cheryl and I talked about you atACR.
(21:29):
Do you want to see?
So, like Novelia, I approachedher and she was so shocked and
excited and I was like here'sthe graphic we made for you.
Would you like a copy?
Why, yes, thank you, thank youso much, and it was great to
have that conversation with herto let her know that patients
are excited about what she'sworking on.
(21:50):
And the other gal that Iremember sitting down with was
let's see, was it SusanMcLaughlin or Ellen Gravelies?
We might've talked to both,didn't we?
And getting to share with them.
Hey, we talked about you too.
Here's the graphic we made, andwe really like what you're
working on and your researchlinking inflammatory arthritis
with cardiovascular disease.
(22:11):
Keep going, we're cheering youon.
We want to see where you'regoing to go with this.
So those are kind of my twotakeaways, all of you and them.
Speaker 2 (22:18):
Community on both sides the patient advocate side
and the provider and researcherside.
I do want to say earlier Imentioned that my impression was
that the foundation fundsdoctors only, which I shouldn't
say that they fund people atvarious stages of research.
So they fund doctors who wantto become rheumatologists, but
they also fund, like, phd,researchers.
(22:40):
So it was funny a few times wewere talking to a researcher,
let's say, at their posterpresentation, and I would
accidentally say, oh, as arheumatologist, what do you
think?
And I'll say, oh, I'm like Ihave a PhD in immunology but I'm
not a MD, like I'm not a doctor.
So I actually find it reallygreat to get people in a room
who have different backgroundsand different rooms of reference
(23:02):
because, like a PhD researcher,from my understanding, is
actually going to have morerigorous training in how to
execute research versus the MDdoctor.
Rheumatologist is more on theclinical side of making the
right decision for the patientbased on that research.
So it's just for me, I justloved getting multiple voices
(23:22):
heard, especially, you know,patient, the patient voice and
something voices heard,especially the patient voice and
something else that reallystood out to me and I'm like the
least cynical person ever, butI honestly have to say I was
surprised that at the end of theday, one of the long days I
think it was the third day whatthey did was different
researchers would present theirresearch in front of the whole
group and then, after three orfour of them would go, there
(23:44):
would be a facilitated Q&Asession and in my past
experience, usually people startdropping out as the day goes on
because they're tired orthey're hungry.
I couldn't believe just howmentally sharp and excited and
into it the researchers stillwere.
At like 3 pm, 4 pm, they werelining up and some of them were,
I would say, senior, olderpeople.
(24:07):
Some of them were legends inrheumatology, because I
recognized them, they've beeninvolved for 30, 40 years and
just to me it was soinspirational seeing people who
are not burned out, becauseright now there are lots of
reasons to be losing hope, rightnow, in research especially.
But this conference was like anantidote to hopelessness because
everyone was.
(24:27):
They were excited, they weresharp, they were sharing ideas
at the tables and figuring out.
You know, okay, how can we?
How they would?
They would raise their hand andsay something like here hey,
have you thought about doingchanging this about your
research project to make it evenbetter, and it wasn't like they
were defensive, like no, wecan't do that.
I was like, oh, thank you, Ilove that idea.
(24:49):
Just that collaboration, thatreally.
That really stood out to me.
So, kind of wrapping up alittle bit, is there anything
else you each wanted to shareabout your experience?
You know that you didn't get toshare already and we'll wrap up
by saying maybe how people canget involved, because you're
probably some people arelistening, I know, right now,
and saying, well, I want to, howdo I get involved in this?
Speaker 3 (25:10):
I think the only thing that I wanted to really
share about it is kind of likewhat you're saying the passion
that these specialists stillhave for rheumatology is
encouraging and has inspired meto continue my advocacy.
I'm just excited to see whatthe future of the foundation has
.
Speaker 4 (25:30):
I think that probably my biggest takeaway and what
I'll remember the most is thatthe level of collaboration that
happens at this conference isbigger than anything I've seen
before.
It is so rare for researchersand rheumatologists and patients
to stand under the same roofand listen to each other so
(25:52):
openly and to obviously behelping one another to figure
out these really big problems.
I didn't see anybody react withhubris, which is one of the
most common things in research.
That really stoppers things upis thinking you know what,
you're knowing the answer to thequestions.
I saw so many people who wereopen to new answers.
(26:14):
It gives me so much hope forwhat these people can do.
Speaker 5 (26:20):
No more takeaways.
I just want to say, like we allmentioned, I just want to say
I'm grateful to the RheumatologyResearch Foundation for
allowing us this opportunity forfunding us the opportunity to
go to Seattle so that we canvoice the patients, advocate for
patients and so that they canhear patient perspectives.
And so that they can hearpatient perspectives Because
(26:43):
oftentimes I feel the physiciansthat I've worked with they can
see the pain and they can seethe pain that we're experiencing
, or acknowledge the pain, butthey don't truly understand what
it feels like to go through it.
And so, yeah, they canprescribe you some medicine or,
you know, recommend theseoptions, but sometimes, like,
they recommend exercise or moreweight-bearing exercise to help
(27:04):
your joints, but sometimes youcan't exercise.
So, just hearing, like thedifferent strategies and
everything from the conferenceLike, for example, when one of
the physicians spoke aboutexercise and how it is used for
OA and different, different likemanagement options they're
working towards that was veryimpactful to see it presented at
(27:29):
the conference.
Speaker 1 (27:30):
I want to share about the fact that we're all
appreciative right?
I'm just echoing a lot of thatthe incredible people that work
for the foundation.
They care about everyone andthey take the time to get to
know every single one of us.
I'd like to think that we wantto get to know them too.
So, getting to go back a secondtime, I don't know about you
and Stasia, but I feel like Idon't know.
(27:52):
We're gaining that rapport.
We're getting to know eachother a little better.
I want to remind people if youhave not signed up to be a room
champion, please do so, becauseit's not about having all the
answers, it's about wanting tomake a difference.
Speaker 2 (28:11):
And so just do it.
Yeah, the only requirements forbecoming a room champion are
filling out this five-minuteform online, and then they will
share your story on theRheumatology Research Foundation
website.
I think over time they're stillbuilding the program, but the
goal would be for them to giveus room champions tasks, for us
to spread the word about what'sgoing on with the foundation and
how patients can get involved.
(28:32):
I'm glad you mentioned that,jenny, because I think they want
to hear as many diverse voicesas they can.
Speaker 6 (28:40):
I think the biggest thing was how excellent the
Rheumatology Research Foundationis in terms of the good that
they're doing for the field ofrheumatology and how important
it is to share that informationwith patients, that sometimes
people feel very lonely in alittle tiny bubble of well, I
see my doctor and I'm strugglingwith my symptoms.
(29:01):
So to know not only is there anentire nonprofit foundation
just raising money to advanceresearch to make sure that
people have more access torheumatologists, but also that
there's so much of a communityout there and this is the
positive side of the internetwhere you can speak with other
people, feel less alone and havehope.
(29:24):
Have hope that all this amazingresearch is have hope, have
hope that all this amazingresearch is going on, have hope
that people will have betteraccess to rheumatologists.
So I think that the energy, theeffort, the passion in the
conference and then how we canshare all of that and bring
everyone up at the same time wasthe takeaway that I left with.
Speaker 2 (29:41):
I'm going to go in reverse order, because earlier I
shouted out the foundation, theRheumatology Research
Foundation, but now I'm going toshout out the five of you,
because that for me, really wasa highlight being able to spend
time in person.
We had an opportunity to have aformal dinner and then we also
had some just fun, like we havean hour, let's go to a bookstore
(30:03):
together, and we ended uptalking about our favorite books
and now we're going to do alittle book club and just those
organic opportunities to connect.
I'll have a shared identity as,like, chronic illness patients
and rheumatic disease patientsand room champions.
But we also were able toconnect on all these other
things like oh, are you dairyfree?
I'm dairy free too.
Or gluten free, which is yourfavorite romance book, you know,
(30:28):
and that's just for me.
That's therapeutic too.
You know.
There's like direct ways ofhealing or feeling community, of
let's talk about our illnesses,and then there's like indirect,
like let's connect on thingsthat aren't related to our
illness at all and remember thatwe're human beings alongside
everything.
So again I do I will say thanksto the foundation again for
(30:50):
supporting everyone's travel andlodging there.
Because I'm a local, I was ableto stay at home and just drive
over, but they've reimbursed myparking and stuff like that too.
So we just really appreciatethat they that's a lot of effort
that they put into involvingpatients in the conference, and
it's not done for all areas ofmedicine and research.
(31:12):
It's often closed doors.
Patients are not encouraged tobe a part of it, so I really
appreciate that.
So Jenny already mentioned howto become a room champion.
We'll both put the link for theapplication in the show notes.
Is there anything else, jenny,that you wanted to?
Speaker 1 (31:28):
I'd want to give a little shout out to the t-shirt
that Stasha's wearing, becausewe all got them and if I would
have been thinking, I could havesuggested we wear them.
Chelsea, you are wearing that,aren't you?
Well, it was so good to catchup with all of you and I look
forward to us being able to domore of this, and I cannot wait
for book club.
Until next time, don't forgetyour spoon.
Hi everyone and welcome to a very special
episode on our podcast.
Today we're pulling back thecurtain for a Room.
Champions Tell All.
We're joined by some incrediblyamazing advocates from across
the country, each living withrheumatic diseases and using
their voices to championresearch, awareness and, of
(00:22):
course, change.
In this heartfelt roundtable,you will hear what inspired us
to step into this role and ourbiggest takeaways from 2025, the
Rheumatology InvestigatorsMeeting, and why community has
become our greatest strength.
From powerful stories tounforgettable friendships, this
episode is a reminder that whenpatients lead, progress follows.
(00:44):
So hello everyone.
Hi, good to see you, hello.
Speaker 2 (00:49):
When we say that we are RIM champions, that is an
initiative from this reallygreat nonprofit organization
called the Rheumatology ResearchFoundation.
And they not only are anonprofit that funds research to
help, of course, find bettertreatments and potential cures
and effective treatments forrheumatic diseases.
(01:10):
They actually also help improvethe workforce because, as we
all know, there are long, longwaiting lists.
It's really hard to get into arheumatologist sometimes.
So they also fund initiativesto try to convince more doctors
to become rheumatologists, whichis really fun.
So what they have done as anonprofit is they've wanted to
(01:31):
amplify the patient voice andthen maybe start including
patient stories and utilizingall of our connections on social
media to help spread the wordabout all the great work that
they're doing as well.
So every year they havesomething called the
investigators meeting, where allof the researchers who they've
funded come together and giveupdates on their research, and
we all attended that in May of2025 as the room champions and
(01:55):
helped again share on our socialmedia all these interesting
updates.
I think we could just start byintroducing ourselves.
I am.
Speaker 3 (02:03):
Chelsea.
I'm from Fort Worth, texas, andI was diagnosed with rheumatoid
arthritis in 19.
And then, a couple years later,I was diagnosed with scleritis
and recently was diagnosed withPCOS.
This stands for polycysticovarian syndrome, and it really
affects hormones and, from whatI was told, it can be due to my
(02:27):
autoimmune disorder.
I'm still learning about it.
It's still a fresh diagnosis.
Speaker 4 (02:33):
Hi, I am Stasha Parker.
I am from the great state ofMaine, on the northeastern coast
.
I was first diagnosed with PCOS, then Hashimoto's and
eventually rheumatoid arthritis,and that's the one that really
took me out of the game and setme on this path.
Speaker 5 (02:52):
Hello, my name is Nya Sims.
I am from Tifton, Georgia, andI was diagnosed with lupus and
rheumatoid arthritis in 2012.
Speaker 6 (03:01):
Hey everyone.
So my name is Tanya.
I was diagnosed with my firstautoimmune disease when I was 12
years old, but lupus was mymost recent diagnosis, which was
actually even more than adecade ago, 11 years ago in my
late 20s, and I am from NorthCarolina and currently live here
.
Speaker 1 (03:19):
Hi everyone.
I'm Jen Weaver, and in 2012, Iwas diagnosed with rheumatoid
arthritis, followed by adiagnosis of pustular psoriasis
in 2017.
And in 2024, I was diagnosedwith alopecia areata, and I live
in.
Speaker 2 (03:39):
Washington State.
My name is Cheryl Crow.
I was diagnosed with rheumatoidarthritis and gastroparesis in
the year 2023.
I live in the greater Seattlearea and I'm also an
occupational therapist, which isjust a little fun fact about me
.
So the first thing we wanted to, after introducing ourselves,
share what was something thatinspired you to share your story
(04:03):
more publicly as a roomchampion.
That we all kind of talkedabout a little bit at the
conference, that there can be alittle bit of trepidation the
first time you start sharingpublicly and social.
You know, on social mediaespecially, there can be a lot
of fears about what are peoplegoing to say and stuff like that
.
Speaker 3 (04:23):
I decided to start sharing my story a couple years
after my diagnosis.
So it was around COVID timethat I was stuck at home.
I had stopped working aroundthat time just due to my
autoimmune disorder and alsobecause of COVID.
(04:44):
So I was home for a lot of mynewly diagnosis and I had been
seeing a therapist during thattime and she had encouraged me
to try to find a support groupfor others that are on the same
journey as me, and I couldn'tfind any locally, obviously
(05:07):
because of COVID and because itis rare to find in-person
support groups for chronicillness.
And so she encouraged me toshare my story on my social
media and at first I was veryhesitant to do that because I
didn't know what it was going tolook like if people were going
(05:27):
to be kind just the typicalfears when starting to put your
life and personal things on forthe public to criticize or
comment on.
The first two people that Ifollowed was Cheryl and Another
Day with RA Allie.
Those were my very first twopeople that I followed that had
(05:49):
RA and they really encouraged meto just continue sharing my
story.
So that kind of pushed me intofinding Meg, which is it's Meg
Fitness.
Through Meg I found Jenny, andthen it snowballed after that,
which is nice, because now Ihave like a little community of
people that I've gotten to knowthese past few years, and
(06:10):
through all of these wonderfulpeople I was able to connect
with the room champions andapply to become a room champion.
Jenny encouraged me to do thatand share my story there, and
then after that encouraged me todo that and share my story
there, and then after that I wasable to be invited to be a part
of the investigators meeting.
So that's kind of how it allhappened.
Speaker 2 (06:32):
It's exciting.
I think it's so beautiful thatyour doctor encouraged you to
share your story, because Ioften hear the opposite.
The doctor say don't go onsocial media, you're going to
get scared, right?
Speaker 3 (06:42):
Yes, yes, I am grateful for her because she
said you know, with boundaries,you're going to get scared,
right?
Yes?
Yes, I am grateful for herbecause she said you know, with
boundaries, we're going to shareyour story, but also let's make
sure that we're finding peoplethat are encouraging and that
will help you to grow throughthis season and not scare you.
It really did take a little bitof time to find the right
(07:04):
people for me, and once I did,they are so inviting and
introduced me to other people.
It actually, honestly, was veryhelpful.
Speaker 4 (07:13):
I actually started out not really sharing my story.
I had been doing a lot ofresearch and trying a lot of
different health changes and Istarted out by just writing
about good health things thatyou could do to make yourself
feel better, no matter what washappening with you.
And then a really good friend ofmine suggested that maybe I
(07:34):
should share my own personalstory because she told me I was
inspiring.
And I didn't believe her at all.
But I started sharing my storyanyway because I really enjoy
writing and I find it verytherapeutic to write down what's
going on.
And from there I was invited tocontribute my story and keeping
(07:55):
it real with arthritis, invitedto join the Room Champion
project when it launched, theperson who created it reached
out and that was really greatand invited to join Impact with
Room Research kind of rightaround the same time.
When I looked at what they didand saw that they helped us not
(08:16):
just by doing the research,which I find exciting as a
scientist myself, but also thatthey have the aim to improve
access to care, I knew I wasimmediately sold.
I had to be involved with thisorganization.
Speaker 5 (08:31):
As I mentioned before , I was diagnosed in 2012 and I
was 12 years old.
Me and my family had to drivefrom Tifton, which is a rural
community, to Augusta, which wasabout three hours away for me,
to receive treatment, and that'swhat started my path of
advocacy and speaking out andtelling about my journey.
I see that the RheumatologyResearch Foundation had reposted
(08:53):
Cheryl and Jenny's videos fromthe conference last year, from
the investigators meeting lastyear.
I was like how do I apply 2023,at that time, I don't think
like there were any initiativesgoing on.
A few months ago, I receivedthe email that I was invited to
come to the Seattle conferenceand I was just so excited to be
able to share my voice withothers again because I already
(09:15):
done it at previous, like ACRs,the ACR conference or the
American College of Rheumatologyconference about three years in
a row now I've been doing that.
So it was exciting to seerheumatology conference about
three years in a row now I'vebeen doing that.
So it was exciting to seerheumatology from a different
perspective at the investigatorsmeeting and see how researchers
are actually doing.
Speaker 6 (09:34):
I was diagnosed quite a while ago, but I had already
been working as a dietician forquite a few years when I was
diagnosed.
So rather, my story wasn't tofind support, unfortunately
which I should have done it isalways a good idea to find
support but I figured, okay,well, at least I have a master's
degree in this field andexperience, I'm gonna figure out
(09:57):
the diet and the lifestyle.
And then I did figure out whathelped me feel a lot better.
So then I kind of put the lupuson the back burner.
Okay, I've got that figured out, I can live my life and not
worry about it.
So so much.
But several years later, I spentprobably too much time online
on span of a couple months andrealized and there were so many
(10:19):
people with lupus that werereally struggling, that were
sharing their stories and feltawful and using my background as
a dietician and also my livedexperience as someone with many
autoimmune diseases, I finallyhad the light bulb moment of
wait a minute.
I can help a lot of other peoplewith the knowledge that I've
(10:40):
figured out the research thatalready exists, but people just
don't know how to implement itin their lives, because you can
read a research study, butunless you're a dietitian, you
have a background in science.
Many people would find itdifficult to start putting it in
place.
So that was what inspired me toshare my story and also create
my private practice that focuseson autoimmune disease.
(11:01):
And then, when it came tobecoming a room champion, I saw
it as an opportunity to continueto spread awareness.
Obviously, the RheumatologyResearch Foundation is doing so
much good, not only for helpingrheumatologists or medical
doctors become rheumatologistsin underserved areas, but the
research itself is servingeveryone in every community
(11:25):
related to rheumatology, lupus,rheumatoid arthritis and so many
other conditions.
It really felt like a wonderfulplace to continue to use my
voice and help others.
Speaker 1 (11:36):
So my story is a little bit like Tanya.
I wasn't joining for supportbecause I'd already gone through
everything.
I wanted to use my voice tosupport others.
But I love the fact that itintroduced me to amazing people
like you and I joined inCheryl's Room to Thrive, even
though I didn't necessarily needit, but I liked being part of
(11:58):
the community and being anothervoice, another voice of support
and connection.
I've met so many incrediblepeople.
That's how I met Chelsea,because I do a support group
with Megan from it's Meg'sFitness.
It kind of started on a whim.
One day I was like, hey,there's people out there that
are like me that can use supportand love.
Why not me?
I can do that.
(12:18):
Next thing you know all theseopportunities of ways to
advocate and to share our voice.
The room champion was one ofthem and you know they dropped
into my DMs one day and said,hey, you know we think you'd be
a perfect fit for this.
What do you think?
I was like wow, I feel honored.
How can I help support yourmission more?
And now I've gotten to attend acouple of things and it's
(12:39):
amazing.
It's amazing to see that theyreally genuinely care and want
to help support us and see usdoing better, and they're okay
with sharing what they'reworking on with us as well.
Speaker 2 (12:51):
So that's kind of where I'm at, turning our pain
into purpose, which I don't takecredit for.
That phrase I heard it once,but I just love it.
It's so poetic.
So thank you whoever coinedthat phrase.
How I got into sharing my storypublicly, actually it's probably
so random.
I don't know if there's anyoneelse who started their arthritis
advocacy journey this way, butI had actually made a video for
(13:14):
a swing dance video contest andI was thinking what's my unique
angle with swing dancing?
Well, I had gotten diagnosedsix years earlier with
rheumatoid arthritis and so Iwas like let me make a video
about dancing with arthritis,like some of the things I do to
make sure that I can stillprotect my joints while dancing.
Well, little did I know thatthis video would be forwarded to
(13:35):
the Arthritis Foundation andthey would reach out to me and
say, hey, you look like somebodywho enjoys, you know, sharing
their voice.
And they asked me to speak at acouple events.
And one thing led to another.
And here I am now and it's just, I think.
Initially I was mostly afraidwhen I was sharing, thinking
(13:55):
about sharing publicly, I wasafraid that people would like
criticize my treatment choices,which has happened.
All the things I was afraid ofhave happened.
But the thing that makes it allworth it is that the positives
outweigh the negatives so muchwhen it comes to sharing your
story.
Like I have people saying whyare you taking those toxic
medications or something youknow?
(14:16):
If I do an injection video, butthen I also have for every one
comment I have saying that orsaying you shouldn't take that,
you should just do diet orsomething else or yoga, and
there's like 20 people who willsay, oh my gosh, I was so scared
to do my first injection andthen I saw your video and I felt
like I could do it too.
So anyway, it's taken me somany wonderful places and
(14:37):
becoming involved in theRheumatology Research Foundation
.
Honestly, I feel terrible sayingthis, but I had been a member
of the American College ofRheumatology and Association of
Rheumatology Professionals andwhenever I go to the conference
I would see this likerheumatology research thing.
I always just kind of walked byit because I was like I'm going
to go see something else.
Like in my head I just I waslike, well, that's for the
doctors, like that's not, likethey're working on that stuff.
(15:00):
But in my head I wasn't what amI going to do?
And even though I'm anoccupational therapist, it the
foundation really gives grantsto doctors.
And then I realized, duh, theyneed help with their public
relations sometimes, becauseresearchers are not, as we all
found, are not always gifted atthe sharing of their story.
Some of them are, some of themwere amazing dynamic presenters,
(15:23):
and others they're so cerebraland amazing in their own way.
I think we, as patients, who areused to maybe capturing
people's attention and providingpatient education online, they
were actually looking for helpfrom us to help spread the word
and get other people interestedin the foundation.
So, long story short, that'show I got involved.
(15:43):
But what keeps me involved isthe community is meeting all of
you, meeting the researchers andthe staff at the foundation.
I feel like I'm like making acommercial for them right now,
but seriously, they're like thenicest.
The nicest hardworking, mostpassionate people, and I've
worked with a lot of differentgroups and nonprofits.
I'm not comparing, I know I'mnot playing favorites, but I'm
just saying that I appreciatethe Rheumatology Research
(16:05):
Foundation a lot.
But back to everyone elsebecause this is a panel, not
just me on my soapbox what isone of the most important
takeaways from the 2025investigators meeting, and it
can be something that youlearned, maybe from the research
updates, or just a memory thatyou'll take with you.
Speaker 3 (16:22):
Yes.
So to kind of circle back onwhat you were saying about the
people that work for thefoundation, I genuinely feel
they are so compassionate witheveryone that they meet.
At least I felt that way at theinvestigators meeting because it
was my very first rheumatologyevent that I've attended, so I
(16:45):
didn't know what to expect whengoing, so I was very nervous
when I first got to Seattle.
But once I was able to meeteveryone that is a part of the
foundation and I saw how muchthey truly cared and are
passionate about rheumatology Idon't want to say change my
(17:05):
perspective, but it encouragedme and it made me feel I was
where I needed to be to helpbring change to rheumatology and
bring awareness to it.
I felt like the foundation doesa great job with that, and also
the fact that there were somany rheumatologists in that
room that are sharing theirresearch and how they're
(17:28):
impacting the rheumatology worldwas encouraging to me and
something that I took away from.
I left the event feelingencouraged by it, and I think
that is what stood out to me themost.
Being able to meet my onlinefriends in person was also a
memory that I won't forget.
Like it's just so nice tofinally see everybody and just
(17:50):
have these sweet conversationsin person.
Speaker 5 (17:54):
A memory that I will take away from the conference is
getting to meet and know all ofyou, because here in Atlanta I
don't have many rheumatologyfriends like friends who
actually deal with theserheumatic diseases every day.
So getting close forming bondswith y'all, like how we did our
activities and even learningfrom each of you.
I know I kept tapping on Jennyduring the conference like, can
(18:16):
you help me with this, can youhelp me with this?
But she was teaching me so muchand like learning how you all
create your content or like dodifferent things for your own
brands.
I feel like it was veryempowering to me that I need to
do better on my side and I feellike since the conference, I've
been doing a little better withactually putting advocacy stuff
out there, putting rheumatologystuff on my page, because I
(18:38):
would do it, but not asconsistently.
So I've been doing better,being more consistent.
Let's hope it stays that way.
And a takeaway from theconference or something I
noticed at the conference I feltthat the conference, like
Cheryl said, it was moreintimate.
So basically like it was a lotdifferent from ACR conferences.
At the ACR conferences I feelmore intimidated there than I
(19:01):
did here.
I felt more like that.
I felt that it was moreintimate and that we could
actually talk to the researcherson a personal level, like how
we got to interview them.
They were very open about theirresearch and also even when we
did the event I believe it wasthe second or third night when
we were all just standing at thetable just chatting with the
rheumatologist.
Like that was very nice andvery intimate and I felt like it
(19:23):
helps us get to know therheumatologist as people more
than just a physician.
They were telling us lifeexperiences and stuff.
So I really appreciated howintimate the conference was.
Speaker 6 (19:33):
So I did absolutely love the conference and all of
the research that was shared wasso impactful because you can
see the passion in the eyes ofthe researchers of.
Thank you so much thefoundation for giving me the
funding so that I could pursuethis question, and it ranged all
over the place, but all of themain goals were to improve
(19:56):
patient outcomes.
Whether it was figuring out avery, very specific part of a
protein or figuring out iftelehealth can be as helpful to
people as an in-personappointment, they all really
were so passionate about theirresearch and absolutely loved
sharing it with us, so that waswonderful.
But also I was just soimpressed with the foundation
(20:20):
and how their track record offiscal responsibility puts them.
I have the stats in the top0.5% of charities and in the
16th consecutive year of gettingthis four star rating, for
basically the money that theyuse is absolutely almost 100%
going towards the things thatthey say, so there's very little
(20:41):
waste.
They really are using thesedonations as best as possible to
help everyone.
Speaker 1 (20:47):
Of course, the memories of getting to spend
time with all of you can't beatthat.
That's incredible.
I miss you all.
I miss you all so much.
That was just a really fun weekof connection and shenanigans.
I'm glad you guys put up withall of my crazy ideas.
We had so much fun doing man onthe Street, I think at first a
(21:07):
few of them were kind of likewhat you want to do, what?
But some of them really gotinto it and had a lot of fun.
Then, of course, my other thingthat I want to bring up is
getting to talk to some of thepeople that I've kind of
fangirled over but was too shyto speak to last time, or
getting to talk to them and sayhey, guess what?
Cheryl and I talked about you atACR.
(21:29):
Do you want to see?
So, like Novelia, I approachedher and she was so shocked and
excited and I was like here'sthe graphic we made for you.
Would you like a copy?
Why, yes, thank you, thank youso much, and it was great to
have that conversation with herto let her know that patients
are excited about what she'sworking on.
(21:50):
And the other gal that Iremember sitting down with was
let's see, was it SusanMcLaughlin or Ellen Gravelies?
We might've talked to both,didn't we?
And getting to share with them.
Hey, we talked about you too.
Here's the graphic we made, andwe really like what you're
working on and your researchlinking inflammatory arthritis
with cardiovascular disease.
(22:11):
Keep going, we're cheering youon.
We want to see where you'regoing to go with this.
So those are kind of my twotakeaways, all of you and them.
Speaker 2 (22:18):
Community on both sides the patient advocate side
and the provider and researcherside.
I do want to say earlier Imentioned that my impression was
that the foundation fundsdoctors only, which I shouldn't
say that they fund people atvarious stages of research.
So they fund doctors who wantto become rheumatologists, but
they also fund, like, phd,researchers.
(22:40):
So it was funny a few times wewere talking to a researcher,
let's say, at their posterpresentation, and I would
accidentally say, oh, as arheumatologist, what do you
think?
And I'll say, oh, I'm like Ihave a PhD in immunology but I'm
not a MD, like I'm not a doctor.
So I actually find it reallygreat to get people in a room
who have different backgroundsand different rooms of reference
(23:02):
because, like a PhD researcher,from my understanding, is
actually going to have morerigorous training in how to
execute research versus the MDdoctor.
Rheumatologist is more on theclinical side of making the
right decision for the patientbased on that research.
So it's just for me, I justloved getting multiple voices
(23:22):
heard, especially, you know,patient, the patient voice and
something voices heard,especially the patient voice and
something else that reallystood out to me and I'm like the
least cynical person ever, butI honestly have to say I was
surprised that at the end of theday, one of the long days I
think it was the third day whatthey did was different
researchers would present theirresearch in front of the whole
group and then, after three orfour of them would go, there
(23:44):
would be a facilitated Q&Asession and in my past
experience, usually people startdropping out as the day goes on
because they're tired orthey're hungry.
I couldn't believe just howmentally sharp and excited and
into it the researchers stillwere.
At like 3 pm, 4 pm, they werelining up and some of them were,
I would say, senior, olderpeople.
(24:07):
Some of them were legends inrheumatology, because I
recognized them, they've beeninvolved for 30, 40 years and
just to me it was soinspirational seeing people who
are not burned out, becauseright now there are lots of
reasons to be losing hope, rightnow, in research especially.
But this conference was like anantidote to hopelessness because
everyone was.
(24:27):
They were excited, they weresharp, they were sharing ideas
at the tables and figuring out.
You know, okay, how can we?
How they would?
They would raise their hand andsay something like here hey,
have you thought about doingchanging this about your
research project to make it evenbetter, and it wasn't like they
were defensive, like no, wecan't do that.
I was like, oh, thank you, Ilove that idea.
(24:49):
Just that collaboration, thatreally.
That really stood out to me.
So, kind of wrapping up alittle bit, is there anything
else you each wanted to shareabout your experience?
You know that you didn't get toshare already and we'll wrap up
by saying maybe how people canget involved, because you're
probably some people arelistening, I know, right now,
and saying, well, I want to, howdo I get involved in this?
Speaker 3 (25:10):
I think the only thing that I wanted to really
share about it is kind of likewhat you're saying the passion
that these specialists stillhave for rheumatology is
encouraging and has inspired meto continue my advocacy.
I'm just excited to see whatthe future of the foundation has
.
Speaker 4 (25:30):
I think that probably my biggest takeaway and what
I'll remember the most is thatthe level of collaboration that
happens at this conference isbigger than anything I've seen
before.
It is so rare for researchersand rheumatologists and patients
to stand under the same roofand listen to each other so
(25:52):
openly and to obviously behelping one another to figure
out these really big problems.
I didn't see anybody react withhubris, which is one of the
most common things in research.
That really stoppers things upis thinking you know what,
you're knowing the answer to thequestions.
I saw so many people who wereopen to new answers.
(26:14):
It gives me so much hope forwhat these people can do.
Speaker 5 (26:20):
No more takeaways.
I just want to say, like we allmentioned, I just want to say
I'm grateful to the RheumatologyResearch Foundation for
allowing us this opportunity forfunding us the opportunity to
go to Seattle so that we canvoice the patients, advocate for
patients and so that they canhear patient perspectives.
And so that they can hearpatient perspectives Because
(26:43):
oftentimes I feel the physiciansthat I've worked with they can
see the pain and they can seethe pain that we're experiencing
, or acknowledge the pain, butthey don't truly understand what
it feels like to go through it.
And so, yeah, they canprescribe you some medicine or,
you know, recommend theseoptions, but sometimes, like,
they recommend exercise or moreweight-bearing exercise to help
(27:04):
your joints, but sometimes youcan't exercise.
So, just hearing, like thedifferent strategies and
everything from the conferenceLike, for example, when one of
the physicians spoke aboutexercise and how it is used for
OA and different, different likemanagement options they're
working towards that was veryimpactful to see it presented at
(27:29):
the conference.
Speaker 1 (27:30):
I want to share about the fact that we're all
appreciative right?
I'm just echoing a lot of thatthe incredible people that work
for the foundation.
They care about everyone andthey take the time to get to
know every single one of us.
I'd like to think that we wantto get to know them too.
So, getting to go back a secondtime, I don't know about you
and Stasia, but I feel like Idon't know.
(27:52):
We're gaining that rapport.
We're getting to know eachother a little better.
I want to remind people if youhave not signed up to be a room
champion, please do so, becauseit's not about having all the
answers, it's about wanting tomake a difference.
Speaker 2 (28:11):
And so just do it.
Yeah, the only requirements forbecoming a room champion are
filling out this five-minuteform online, and then they will
share your story on theRheumatology Research Foundation
website.
I think over time they're stillbuilding the program, but the
goal would be for them to giveus room champions tasks, for us
to spread the word about what'sgoing on with the foundation and
how patients can get involved.
(28:32):
I'm glad you mentioned that,jenny, because I think they want
to hear as many diverse voicesas they can.
Speaker 6 (28:40):
I think the biggest thing was how excellent the
Rheumatology Research Foundationis in terms of the good that
they're doing for the field ofrheumatology and how important
it is to share that informationwith patients, that sometimes
people feel very lonely in alittle tiny bubble of well, I
see my doctor and I'm strugglingwith my symptoms.
(29:01):
So to know not only is there anentire nonprofit foundation
just raising money to advanceresearch to make sure that
people have more access torheumatologists, but also that
there's so much of a communityout there and this is the
positive side of the internetwhere you can speak with other
people, feel less alone and havehope.
(29:24):
Have hope that all this amazingresearch is have hope, have
hope that all this amazingresearch is going on, have hope
that people will have betteraccess to rheumatologists.
So I think that the energy, theeffort, the passion in the
conference and then how we canshare all of that and bring
everyone up at the same time wasthe takeaway that I left with.
Speaker 2 (29:41):
I'm going to go in reverse order, because earlier I
shouted out the foundation, theRheumatology Research
Foundation, but now I'm going toshout out the five of you,
because that for me, really wasa highlight being able to spend
time in person.
We had an opportunity to have aformal dinner and then we also
had some just fun, like we havean hour, let's go to a bookstore
(30:03):
together, and we ended uptalking about our favorite books
and now we're going to do alittle book club and just those
organic opportunities to connect.
I'll have a shared identity as,like, chronic illness patients
and rheumatic disease patientsand room champions.
But we also were able toconnect on all these other
things like oh, are you dairyfree?
I'm dairy free too.
Or gluten free, which is yourfavorite romance book, you know,
(30:28):
and that's just for me.
That's therapeutic too.
You know.
There's like direct ways ofhealing or feeling community, of
let's talk about our illnesses,and then there's like indirect,
like let's connect on thingsthat aren't related to our
illness at all and remember thatwe're human beings alongside
everything.
So again I do I will say thanksto the foundation again for
(30:50):
supporting everyone's travel andlodging there.
Because I'm a local, I was ableto stay at home and just drive
over, but they've reimbursed myparking and stuff like that too.
So we just really appreciatethat they that's a lot of effort
that they put into involvingpatients in the conference, and
it's not done for all areas ofmedicine and research.
(31:12):
It's often closed doors.
Patients are not encouraged tobe a part of it, so I really
appreciate that.
So Jenny already mentioned howto become a room champion.
We'll both put the link for theapplication in the show notes.
Is there anything else, jenny,that you wanted to?
Speaker 1 (31:28):
I'd want to give a little shout out to the t-shirt
that Stasha's wearing, becausewe all got them and if I would
have been thinking, I could havesuggested we wear them.
Chelsea, you are wearing that,aren't you?
Well, it was so good to catchup with all of you and I look
forward to us being able to domore of this, and I cannot wait
for book club.
Until next time, don't forgetyour spoon.
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