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Advocacy, Patient Stories, Podcast

Patient Voices: Reflections from Rheum Champions

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Summary:

In this special episode of our podcast, we bring together a group of inspiring advocates known as Rheum Champions, each living with rheumatic diseases, to share their experiences and insights. These advocates participated in the 2025 Rheumatology Investigators Meeting, organized by the Rheumatology Research Foundation. 

They discuss how they became Rheum Champions, their personal journeys with conditions like rheumatoid arthritis, lupus, PCOS, and more, and the importance of community and support. The episode also highlights significant takeaways from the meeting, including research updates, the passion of the researchers, and the heartwarming sense of community. 

This podcast serves as a powerful reminder of how important it is to integrate the patient voice into rheumatology research.  

*This episode was originally recorded for the My Spoonie Sisters podcast. 

Episode at a glance:

  • 00:00 Welcome to the Rheum Champions Tell All
  • 01:59 Introducing the Rheum Champions
  • 03:55 Sharing Our Stories: The Journey to Advocacy
  • 07:13 The Impact of Community and Support
  • 10:55 Becoming a Rheum Champion
  • 16:09 Highlights from the 2025 Investigators Meeting
  • 24:52 Final Thoughts and How to Get Involved

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Jennifer Weaver

Meet Jen, founder of My Spoonie Sisters and the face behind @jenthegracefuladvocate  on Instagram and TikTok. She created her community for spoonies of all shapes, sizes, challenges, and spoons to support, educate, teach, and learn. We believe in the power of knowledge and the joy of learning, and we also enjoy some humor along the way.

Living with anxiety, rheumatoid arthritis, and medically induced psoriasis, she understands the challenges you face. Jen strives to support other women the way she needed and didn’t have at the beginning of her diagnosis with RA, because she knows how important it is to feel understood and cared for. 

Tanya Freirich, MS, RDN, CDCES — Registered Dietitian Nutritionist

I have worked as a dietitian for more than a decade and had the pleasure of counseling thousands of people. I collaborated with those people to reach their goals and feel their best no matter their medical condition.

​

My own struggles with autoimmune diseases started more than 20 years ago. After being diagnosed with Lupus and suffering through many flares, I completely changed my diet and lifestyle (and I was already following a “healthy” diet as a dietitian!) and completely eliminated my flares! 

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I continue to work with people with Lupus to heal themselves, eliminate flares and feel great.

Jayna Sims

Janya “Nya” Sims is a fourth-year medical student at Morehouse School of Medicine. She is passionate about healthcare access optimization, rheumatology and using her lived experience with lupus to inspire and advocate for others.

Stasha (Annastasha Parker): I’m a passionate advocate for self love and self advocacy. I think they are both critical to my living well with RA and other autoimmune issues.  Sharing helpful tips, hope, information, and my own story on my blog tenaciousME gives me an outlet and hopefully helps others feel less alone.  

Chelsea Flores 

My name is Chelsea but I go by @thefloresgrowhere on instagram. I was diagnosed with RA in 2019, Scleritis in 2021, and recently I was diagnosed with PCOS. Along the way, I decided to use my social media to share my autoimmune journey and connect with others facing similar battles. I enjoy using my content to show that even on the darkest days, life can still move forward, regardless of a diagnosis.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:00] Jennifer Weaver: Hi everyone, and welcome to a very special episode on our podcast. Today we’re pulling back the curtain for a Rheum Champions Tell All. We’re joined by some incredibly amazing advocates from across the country, each living with rheumatic diseases and using their voices to champion research awareness, and of course.

Change in this heartfelt round table you will hear what inspired us to step into this role and our biggest takeaways from 2025, the rheumatology investigators meeting, and why community has become our greatest strength, from powerful stories to unforgettable friendships. This episode is a reminder. The when patients lead progress follows.

So, hello everyone. 

[00:00:47] Cheryl Crow: Hi. Good to see you. Hello. Hello. When we say that we are Rheum champions, that is an initiative from this really great nonprofit organization called the Rheumatology Research. Foundation and they not only are a, a nonprofit that funds research to help of course find better treatments and or potential cures and effective treatments for rheumatic diseases, they actually also help improve the workforce.

’cause as we all know, there are long, long waiting lists. It’s really hard to get into a rheumatologist sometimes. So they also fund initiatives to try to convince more doctors to become rheumatologists, which is really fun. So they, what they have done as a nonprofit is they’ve wanted to amplify the patient voice and they may be start including patient stories and utilizing all of our connections on social media to help spread the word about all the great work that they’re doing as well.

So every. Year they have something called the investigators meeting where all of the researchers who they funded come together and give updates on their research, and we all attended that in May of 2025 as the Rheum champions and helped again share on our social media. All these interesting updates. I think we could just start by introducing ourselves.

Hi, I’m 

[00:02:02] Chelsea Flores: Chelsea. I’m from Fort Worth, Texas, and I was diagnosed with rheumatoid arthritis in 19, and then a couple years later I was diagnosed with S Scleritis, and recently it was diagnosed with PCO. It, uh, stands for polycystic ovarian syndrome and it really affects hormones and from what I was told, can be due to my autoimmune disorders.

I’m still learning about it. It’s still a fresh diagnosis. 

[00:02:33] Stasha Parker: Hi, I am Stacia Parker. I am from the great state of Maine 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 outta the game and set me on this path.

[00:02:52] Nya Sims: Hello, my name is Nia Sims. Um, I am from Tifton, Georgia, and I was diagnosed with lupus and rheumatoid arthritis in 2012. Hi 

[00:03:01] Tanya Freirich: everyone. So my name is Tanya. I was diagnosed with my first autoimmune disease when I was 12 years old, but lupus was my most recent diagnosis, which was actually even more than a decade ago, 11 years ago, um, in my late twenties.

And I am from North Carolina and currently live here. Hi everyone. I’m 

[00:03:21] Jennifer Weaver: Jen Weaver, and in 2012 I was diagnosed with rheumatoid arthritis, followed by a diagnosis of. Pustular psoriasis in 2017 and in 24 24 I was diagnosed with alopecia areata. I live in Washington State. 

[00:03:40] Cheryl Crow: My name is Cheryl Crow. I was diagnosed with rheumatoid arthritis and gastroparesis in the year 2023.

I live in the greater Seattle area, and I’m also an occupational therapist, which is just a little fun fact about me. So the first thing we wanted to after, after introducing ourselves, Cher, what was something that inspired you to share your story more publicly? As a Rheum champion, um, that we all kind of talked about that a little bit at the conference, that there can be a little bit of trepidation the first time you start sharing publicly and social, you know, on social media especially.

There can be a lot of fears about what are people gonna say, um, and stuff like that. 

[00:04:22] Chelsea Flores: I decided to start sharing my story a. Couple years after my diagnosis, so it was around COVID time that I was stuck at home. I had stopped working around that time, uh, just due to my autoimmune disorder and also because of COVID.

So I was home for a lot of my newly diagnosis, and I had been seeing a therapist during that time. And she had encouraged me to try to find a support group for others that are. On the same journey as me, and I couldn’t find any locally, obviously because of COVID and because it is rare to find, uh, in-person support groups for chronic illness.

And so she encouraged me to share my story on. My social media, and at first I was very hesitant to do that because I didn’t know what it was gonna look like if people were gonna be kind. Just the typical fears when starting to put your life and personal things on for the public to criticize or comment on.

The first two people that I followed was Cheryl and another day with RA Allie. Those were my very first two people that I followed that had. RA and they really encouraged me to just continue sharing my story. So that kind of pushed me into finding Meg, which is it’s Meg Fitness through Meg. I found Jenny and then it snowballed after that.

Um, which is nice ’cause now I have like a little community of people that I’ve gotten to know these past few years and through. All of these wonderful people. I was able to connect with the Rheum champions and apply to become a Rheum champion. Jenny encouraged me to do that and share my story there, and then after that I was able to be invited to be a part of the investigators meetings.

So that’s kind of how it all happened. It’s exciting. 

[00:06:33] Cheryl Crow: I think it’s so beautiful that your doctor encouraged you to share your story. ’cause I often hear the opposite that the doctor say, don’t go on social media. You’re gonna get scared, right? 

[00:06:42] Chelsea Flores: Yes, yes. I am grateful for her because she said, you know, with boundaries, we’re gonna share your story.

But also let’s make sure that we’re finding. People that are encouraging and that will help you to grow through the season and not scare you. It really did take a little bit of time to find the right people for me, and once I did I, they are so inviting and introduced me to other people. It actually honestly was very helpful.

[00:07:13] Stasha Parker: I actually started out not really sharing my story. I had been doing a lot of research and trying a lot of different health changes, and I started out by just writing about good health things that you could do to make yourself feel better no matter what was happening with you. And then a really good friend of mine suggested that maybe I should share my own personal story because she, she told me I was inspiring and I didn’t believe her.

At all. But I started sharing my story anyway because I really enjoy writing and I find it very therapeutic to write down what’s going on. And from there I was invited to contribute my story in, um, keeping it real with arthritis. Um, invited to join the Rheum Champion Project at when it launched, the person who created it reached out, and that was.

Really great and invited to join Impact with Rheum research. Kind of right around the same time when I looked at what they did and saw. That they helped us, not just by doing the research, which I find exciting as a scientist myself, but also that they have the aim to improve access to care. I knew I was immediately sold.

I had to be involved with this organization. 

[00:08:31] Nya Sims: Well, as I mentioned before, I was diagnosed in 2012 and I was 12 years old. Me and my family had to drive from Tifton, which is a rural community. To Augusta, which was about three hours away for me to receive treatment. That’s what started my path of like advocacy and speaking out and telling about my journey.

I seen that the Rheumatology Research Foundation had reposted Cheryl and Jenny’s, uh, videos from the conference last year. From the investigators meeting last year. I was like, how do I apply 2023 at that time? Um, I don’t think like. There weren’t any initiatives going on. So a few months ago I received an email that I was invited to come to the Seattle conference and I was just so excited to be able to share my voice, um, with others again, ’cause I already done it previous, like acr, the A CR conference or the American College of Rheumatology conference about three years in a row now I’ve been doing that.

So it was exciting to see rheumatology from a different perspective at the investigators meeting and see how researchers are actually. 

[00:09:34] Tanya Freirich: I was diagnosed quite a while ago, but I had already been working as a dietician for quite a few years when I was diagnosed. So rather, my story wasn’t to find support, unfortunately, which I should have done.

It is always a good idea to find support, but I figured, okay, well at least I have a master’s degree in this field and it’s. I’m gonna figure out the diet and the lifestyle, and then I did figure out what helped me feel a lot better. So then I kind of put the lupus on 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 spent probably too much time online on span of a couple months and realized. There were so many people with lupus that were really struggling, that were sharing their stories and felt awful, and using my background as a dietician and also my lived experience as someone with many autoimmune diseases, I finally had the light bulb moment of, wait a minute.

I can help a lot of other people with the knowledge that I’ve figured out the research that already exists. But people just don’t know how to implement it in their lives because you can read a research study, but unless you’re a dietician, you have a background in science, many people would find it difficult to start putting it in place.

Um, so that was what inspired me to share my story and also create my private practice that focuses on autoimmune disease. And then when it came to becoming a Rheum champion, I saw it as an opportunity to continue to spread awareness. Obviously the Rheumatology Research Foundation is. Doing so much good, not only for helping rheumatologists or medical doctors become rheumatologists in underserved areas, but the research itself is serving everyone in every community related to rheumatology, lupus, rheumatoid arthritis, and so many other conditions.

It really felt like a wonderful place to continue to use my voice and help others. 

[00:11:35] Jennifer Weaver: So my story’s a little bit like Tanya. I wasn’t joining for support because I’d already gone through everything I wanted to. Use my voice to support others, but I love the fact that it introduced me to amazing people like you.

And I joined in Cheryl’s Rheum to thrive, even though I didn’t necessarily need it, but I liked being part of the community and being another voice, another voice of support and connection. I’ve met so many incredible people. That’s how I met Chelsea, because I do a support group with Megan from it’s Meg’s fitness.

It kind of started on a whim. One day. I was like, Hey. There’s people out there that are like me, that could use support and love. Why not me? I can do that next thing. You know, all these opportunities of, of ways to advocate and to share. Our voice Rheum champion was one of them, 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 your mission more? And now I’ve gotten to attend a couple of things and it’s amazing. It’s amazing to see that they really genuinely care and wanna help support us and see us doing better, and they’re okay with sharing what they’re working on with us as well.

[00:12:50] Cheryl Crow: So that’s kind of where I’m at turning our pain into purpose, which I don’t take credit for that phrase. I heard it once, but I just love it. It’s so poetic. So thank you whoever coined that phrase, how I got into sharing my story publicly. Actually my, it’s probably so random. I don’t know if there’s anyone else who started their arthritis advocacy journey this way, but I had actually made a video line for a, a swing dance video contest, and I was thinking.

What’s my unique angle with swing dancing? Well, I had gotten diagnosed six years earlier with rheumatoid arthritis, and so I was like, let me make a video about dancing with arthritis, like some of the things I do to make sure that I can still protect my joints while dancing. Well, little did I know that this video would be forwarded to the Arthritis Foundation and they would reach out to me and say, Hey, you look like somebody who enjoys.

Sharing their voice and, um, and they asked me to speak at a couple events and one thing led to another, and here I am now and it’s just, I think it initially, I, I was mostly afraid when I was sharing, thinking about sharing publicly, I was afraid that people would like criticize my treatment choices, which has happened.

All the things I was afraid of have happened. But the thing that makes it all worth it is that the positives outweigh the negative so much when it comes to sharing your story. Like I have people saying, why are you taking those toxic medications? Or something, you know, if I do an injection video, but then I also have for everyone comment I have saying that or saying You should take that.

You should just do diet or something else. Or yoga and there’s like 20 people who will say, oh my gosh, I was so scared to do my first injection, and then I saw your video and I felt like I could do it too. So anyway, it’s taken me so many wonderful places and becoming involved in the Rheumatology Research Foundation.

Honestly, I feel terrible saying this, but I had been a member of the American. College of Rheumatology and Association of Rheumatology Professionals. And whenever I’d go to the conference, I would see this like rheumatology research thing. I always just kind of walked by it. ’cause I was like, I’m gonna go see something else.

Like in my head, I just. I was like, well, that’s for the doctors. Like that’s not like they’re working on that stuff. But in my head, I wasn’t, what would I, what am I gonna do? And even though I’m an occupational therapist, it’s really the, the foundation really gives grants to doctors. And then I realized, duh, they need help with their public relations sometimes because researchers are not, as we all found, are not always gifted at these.

Uh, sharing of their stories. Some of them are, some of them were amazing dynamic presenters and others. They’re so cerebral and amazing in their own way. I think we as patients who are used to maybe capturing people’s attention and providing patient education online, they were actually looking. For help from us to help spread the word and get other people interested in the foundation.

So, long story short, that’s how I got, that’s how I got involved. But what keeps me involved is the community is meeting all of you, meeting the researchers and the staff at the foundation. I feel like I’m like making a commercial for them right now, but seriously, they’re like the nicest, the nicest, hardworking, most passionate people.

And I’ve worked with a lot of different groups and nonprofits. I’m not comparing, I know I’m not playing favorites, but I’m just saying that I appreciate. The Rheumatology Research Foundation a lot, but back to everyone else, ’cause this is a panel, not just me on my soapbox. What is one of the most important takeaways from the 2025 investigators meeting?

And it can be something that you learned maybe from the research updates or just a memory. You’ll take with you. 

[00:16:21] Chelsea Flores: Yes. So to kind of circle back on what you were saying about the people that work for the foundation, I genuinely feel they are so compassionate with everyone that they meet at. At least I felt that way at the investigators meeting.

Because it was my very first rheumatology event that I’ve attended, so I didn’t know what to expect when going. So I was very nervous when I first got to Seattle. But once I was able to meet everyone that is a part of the foundation and I saw how much they truly cared and are. Passionate about rheumatology.

I don’t wanna say change my perspective, but it encouraged me and it made me feel I was where I needed to be to help bring change to rheumatology and bring awareness to it. I felt like the foundation does a great job with that, and also the fact that. There were so many rheumatologists in that Rheum that are sharing their research and how they’re impacting the rheumatology world was encouraging to me and something that I took away from, I left the event feeling encouraged by it and that I think that is what stood out to me the most.

Being able to meet my online friends in person was also a memory that I won’t forget. Like it’s just so nice to finally see everybody and just have. These sweet conversations in person. 

[00:17:54] Nya Sims: A memory that I will take away from the conference is getting to meet and know all of you. Um, ’cause here in Atlanta, I don’t have many rheumatology friends with, like friends with who actually deal with these rheumatic diseases every day.

So getting close performing bonds with y’all, like how we did our activities and even learning from each of you. I know I kept tapping on Jenny. During the conference, like, can you help me with this? Can you help me with this? But she was teaching me so much and like learning how you all create your content or like do different things for your own brands.

I feel like, uh, it was very empowering to me that I need to do better on my side. And I feel like I’ve been, since the conference, I’ve been doing a little better with actually putting advocacy stuff out there, putting rheumatology stuff on my page. Um, because I would do it, but not like as consistently.

So I’ve been doing. Better being more consistent. Let’s hope it stays that way. And, um, a takeaway from the conference or something that I noticed at the conference, I felt at the conference, like Cheryl said, it was more intimate. So basically like, it was a lot different from a CR conferences at the A CR conferences.

I feel more intimidated there than I did here. I felt more like. That I felt that it was more intimate and that we could actually talk to the researchers on a personal level, like how we got to interview them. They were very open about their research and also even when we did the event, I believe it was the second or third night when we were all just standing at the table, just chatting with the rheumatologist.

Like that was very nice and very intimate. And I felt like it helps us get to know the rheumatologist as people more than just a physician. They were telling us life experiences and stuff, so I, I really appreciated how intimate the conference was. 

[00:19:33] Tanya Freirich: So I did absolutely love the conference and all of the research that was shared was.

So impactful because you can see the passion in the eyes of the researchers of Thank you so much. The foundation for giving me the funding so that I could pursue this question, and it ranged all over the place, but all of the main goals were to improve patient outcomes, whether it was figuring out. A very, very specific part of a protein or figuring out if Telehealth can be as helpful to people as an in-person appointment.

They all really were so passionate about their research and absolutely loved sharing it with us. So that was wonderful. But also, I was just so impressed with the foundation and. How their track record of fiscal responsibility puts them. I have the stats in the top 0.5% of charities and in the 16th consecutive year of getting this four star rating for basically the money that they use is absolutely.

Almost a hundred percent going towards the things that they say. So there’s very little waste. They really are using these donations as best as possible to help everyone. 

[00:20:47] Jennifer Weaver: Of course, the memories of getting to spend time with all of you can’t beat that. That’s incredible. I miss you all. I miss you all so much.

That was just a really fun week of connection and shenanigans. I’m glad you guys. Put up with all of my crazy ideas. We had so much fun doing Man on the Street. I think at first a few of them were kind of like, what you wanna do what? But some of them really got into it and had a lot of fun. Then of course, my other thing that I wanna bring up is getting to talk to some of the people that I’ve kind of fangirled over, but was too shy to speak to last time.

Or getting to talk to them and say, Hey, guess what? Cheryl and I talked about you at a CR. Do you wanna see? So like novella, I approached her and she w she was so shocked and excited and I was like, here, here’s the graphic we made for you. Would you like a copy? Well, yes. Thank you. Thank you so much. And it was great to have that conversation with her, to let her know that.

Patients are excited about what she’s working on. And the other gal that I, I remember sitting down with was, let’s see, was it Susan McLaughlin or Ellen Graves? We might have talked to both, didn’t we? Yes. Yeah. And getting to share with them, Hey, we talked about you too. Here’s, here’s the graphic we made and, and we really like what you’re working on and your research linking inflammatory arthritis with cardiovascular disease.

Keep going. We’re cheering you on. We wanna see where you’re going to go with this. So those are kind of my two takeaways. All of you 

[00:22:18] Cheryl Crow: and them community on both sides. Yeah. The patient advocate side and the provider and researcher side. And I should, I do wanna say, earlier I mentioned that they, my impression was that the foundation funds doctors only, which I shouldn’t say that they fund.

People at various stages of research. So they fund doctors who want to become rheumatologists, but they also fund like PhD researchers. So it was funny a few times we were talking to a researcher, let’s say, at their poster presentation, and I would accidentally say, oh, as a rheumatologist, what do you think?

And they’ll say, oh, I’m like a, I have a PhD in immunology, but I’m not a md. Like I’m not a doctor. So yeah, I actually find it really great to get people in a Rheum who have a different. Backgrounds and different, um, frame of reference because like a PhD researcher from my understanding is actually gonna have more rigorous training in how to execute research versus the MD doctor rheumatologist is more on the.

Making the right decision for the patient based on that research. So it’s just, for me, I just loved getting multiple voices heard, especially, you know, patient, the patient voice and something else that really stood out to me. And I, I’m like the least clinical person ever, but I honestly have to say I was surprised like that the end of the day, one of the long days.

I think it was the Thursday. What they did was different researchers would present their research in front of the whole group, and then after three or four of them would go, there would be a facilitated q&a session. And in my past experience, usually people start dropping out as the day goes on because they’re tired or they’re hungry.

I couldn’t believe just. How mentally sharp and excited and like into it. The researchers still were at like 3:00 PM 4:00 PM they were lining up and um, some of them were, I would say, senior, you know, older people who’ve, some of them were legends in rheumatology because I recognized them. They’ve been involved for, you know, 30, 40 years and just.

To me, it was so inspirational seeing people who are not burned out. Because right now there are lots of reasons to be losing hope right now in research especially. But like this conference was like an antidote to hopelessness because everyone was, they were excited, they were sharp, they were sharing ideas at the tables and say, figuring out, you know, okay, how can we, how they would.

They would raise their hand and say something like, here, hey, have you thought about doing, changing this about your research project to make it even better? And it wasn’t like they were defensive, like, no, we can’t do that. I was like, oh, thank you. I love that idea. Just that collaboration that really, that really stood out to me.

So kind of wrapping up a little bit, is there anything else you each wanted to share about your experience? You know, that you didn’t get to share already. And we’ll wrap up by saying maybe how people can get involved, because probably some people are listening. I know right now and saying, wait, I wanna, how do I get involved in this?

I 

[00:25:10] Chelsea Flores: think the only thing that I wanted to really share about it is. Kind of like what you were saying, the passion that these specialists still have for rheumatology is encouraging and has inspired me to continue my advocacy. I’m just excited to see what the future of the foundation has. 

[00:25:30] Stasha Parker: I think that probably my biggest takeaway and what I’ll remember the most is that the level of collaboration that happens at.

This conference is bigger than anything I’ve seen before. It is so rare for researchers and rheumatologists and patients. To stand under the same roof and listen to each other so openly and to obviously be helping one another to figure out these really big problems. I didn’t see anybody react with hubris, which is one of the most common things in research that really stops things up is thinking, you know what?

You’re knowing the answer to the questions. I saw so many people who were open to new answers. It gives me so much hope for what these people can do. 

[00:26:20] Nya Sims: No more takeaway, I just wanna say. Um. Like we all mentioned, I just wanna say I’m grateful to the Rheumatology Research Foundation for allowing us this opportunity for funding us the opportunity to go to Seattle so that we can voice the patients, um, voice advocate for patients and so that they can hear patient perspectives.

’cause oftentimes I feel the physicians that I’ve worked with, they, they can see the pain. They can see the pain that we are experiencing or acknowledge the pain, but they don’t truly understand what it feels like to go through it. And so yeah, they can prescribe you some medicine or you know, recommend these options.

But sometimes like they recommend exercise or more weight bearing exercise to up your joints, but sometimes you can’t exercise. So just hearing like the different strategies and everything from the conference. Like for example, when one of the, uh, physicians, uh, spoke about exercise and how it is used for OA and different, um, different like management options they’re working towards, that was very impactful to see like from.

That to see it presented at the conference. 

[00:27:30] Jennifer Weaver: I wanna share about the fact that we’re all appreciative, right? I’m just echoing a lot of that. The incredible people that work for the foundation, they, they care about everyone and they take the time to get to know every single one of us. I’d like to think that we, we wanna get to know them too.

So getting to go back a second time. I don’t know about you and Sasha, but I feel like, I don’t know. We’re getting that rapport. We’re getting to know each other a little better. I, I want to remind people, if you have not signed up to be a Rheum champion, please do so because it’s not about having all the answers.

It’s about wanting to make a difference. It’s so just. Do it. 

[00:28:06] Cheryl Crow: Yeah. The, the only requirements for becoming a Rheum champion are filling out this five minute form online, and then they will share your story on the Rheumatology Research Foundation website. I think over time they’re still building the program, but the goal would be to give.

For them to give us Rheum champions tasks for us to spread the word about what’s going on with the foundation and how patients can get involved. I’m, I’m glad you mentioned that, Jenny, because Yeah, it, it, we, I think they wanna hear as many diverse voices. As, as they can. 

[00:28:40] Tanya Freirich: I think the biggest thing was how excellent the Rheumatology Research Foundation is in terms of the good that they’re doing for the field of rheumatology and how important it is to share that information with patients that sometimes people feel very lonely in a little tiny bubble of, well, I see my doctor and I’m struggling with my symptoms.

So to know not only is there a entire nonprofit foundation just. Raising money to advance research to make sure that people have more access to rheumatologists, but also that there’s so much of a community out there, and this is the positive side of the internet where you can speak with other people, feel less alone, and have hope.

Have hope that all this amazing research is going on. Have hope that people will have better access to rheumatologists. So I think that the energy, the effort, the passion in the conference. And then how we can share all of that and bring everyone up at the same time was the takeaway that I left with.

[00:29:41] Cheryl Crow: I’m gonna go in reverse order. ’cause earlier I shouted out the foundation, the Rheumatology Research Foundation, but now I’m gonna shout out the five of you because that for me, really was a highlight, being able to spend time in person. We had an opportunity to, you know, have like a formal dinner. And then we also had some just fun like, oh, we have an hour, let’s go to a bookstore together.

And we ended up talking about our favorite books and now we’re gonna do a little book club and just those organic opportunities to connect. I’ll, I’ll have a shared identity as like chronic illness patients and rheumatic disease patients and Rheum champions. But we also. We’re able to connect on all these other things like, oh, are you dairy free?

I’m dairy free too. Or gluten-free we love, which is, which is your favorite romance book? You know? And that’s just for me, that’s therapeutic too. You know, there’s like direct ways of healing or feeling community of let’s talk about our illnesses. And then there’s like indirect, like, let’s connect on things that aren’t related to our illness at all.

And remember that we’re human beings. Alongside everything. So, um, yeah, again, I do, I will say thanks to the foundation again for the, you know, supporting everyone’s travel and lodging there, because I’m a, I’m a local, I was able to stay at home, um, and, and just drive over, but they, they reimburse my parking and stuff like that too.

So we just really appreciate that they, that’s a lot of effort that they put into involving. Patients in the conference and it’s not done for all areas of medicine and research. Patients aren’t often, it’s often closed doors. Patients are not encouraged to be a part of it. So I really appreciate that. So Jenny already mentioned how to become a Rheum champion.

We’ll both put the link for the application in the show notes. Is there anything else, Jenny, that you wanted to, I’d wanna give a little shout out 

[00:31:30] Jennifer Weaver: to the. T-shirt this Tasha’s wearing because we all got them. And if I would’ve been thinking I could have suggested we wear them. Chelsea, you are wearing the hat, aren’t you?

Well, it was so good to catch up with all of you, and I look forward to us being able to do more of this, and I cannot wait for book club. Until next time, don’t forget your spoon.

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