Podcast: 75 Years of Progress: Part 3

Full Transcript:
Released 6/13/2023

PODCAST OPEN:            
You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts. 
        
MUSIC BRIDGE 

Steve Taylor: 
Welcome to the Live Yes With Arthritis podcast. I'm Steve Taylor, president and CEO of the Arthritis Foundation, and I'll be your host on today's episode. Today's episode focuses on juvenile arthritis and is a part of our three-part series commemorating the Arthritis Foundation's 75th Anniversary. 

First, I’m going to talk with a husband-and-wife team who both together, as Arthritis Foundation volunteers, have been a driving force for many things we do, but especially our juvenile arthritis program. Then I’ll introduce you to a woman who helped spearhead our JA initiatives in the 1970s, along with the Arthritis Foundation staff member who leads our programs today. And to close us out, you’ll get to meet a mother and son team who will give us their perspectives about the work we’re doing to support JA patients and their families. 

Liz and Steve Smith are unmatched in their service and support of the Arthritis Foundation and families of children with juvenile arthritis. Liz became involved with the Foundation in the mid-1990s after their daughter was diagnosed with juvenile arthritis. They now have six children, three of whom are living with some form of arthritis. 

Liz served on the board of the American Juvenile Arthritis Organization, which became the Foundation's JA program, and she launched the Kids Summit at the annual Advocacy Summit. Liz and Steve have served on numerous local and national committees. They've chaired fundraising events. And Liz has co-chaired the JA Conference, which is now called the JA Family Summit, twice, once with Steve. 

Steve, a Navy veteran, has led the Veterans Live Yes With Arthritis Connect Group, among many other leadership roles with the organization. They were also awarded the Kathy Angel Award for parent leadership in 2004. And in 2018, the Foundation awarded and named our highest juvenile arthritis award after Steve and Liz; the Steve and Liz Smith Legacy Award is awarded annually to a parent/caregiver or parents/caregivers who have made a lasting impact in the Arthritis Foundation and the JA community. 

And, as if that wasn't enough, in 2020 Steve was awarded our Charles B. Harding Award for Distinguished Service, the Arthritis Foundation's highest volunteer award. So, welcome Steve and Liz to this episode. 

Liz Smith: 
Thank you. 

Steve Smith: 
Thanks. Hi, Steve. 

Steve Taylor: 
It's amazing to have one volunteer, but to have a super couple like the two of you, who have done so much for the Foundation, how did you actually get involved and become the powerhouses that you've become? 

Liz Smith: 
Well, we got involved actually after Emily was diagnosed. We didn't know much about the Foundation. But when we were in the rheumatologist's office, he handed us these pamphlets on different medications, and stamped on the back of the pamphlets was information about the Arthritis Foundation with the phone number and an address. So, we called and realized that, if we got involved, we would get to know other families, and we wouldn't feel so very alone with our daughter's diagnosis. 

Steve Smith: 
We didn't pick the Arthritis Foundation. It kind of picked us. (laughs) 

Steve Taylor: 
What did you both do to kind of get your feet wet before you became national volunteers? 

Liz Smith: 
We started out with the Jingle Bell Run. It was quick and it was easy. And the JA Conference, I think, was the big one because it gave our kids a sense of community, even the kids who didn't have arthritis, and helped them connect with others who were walking the same path. The first one I went to was in 1998, and a couple of years later Steve joined me in getting involved in the conferences when he was not deployed during them. 

It was important to us to find a way to be involved because we knew that, in the long run, it would help not just Emily, but other children and their families. And giving back is something we were both raised to do. 

Steve Smith: 
Liz dragged me to the first conference that we both went to in 2000 in Orlando. I went to a dads’ group, and it was just a lot of guys just going because their wives made them go. 

Liz Smith: 
He said the dads, when he first went, didn't really talk. He felt like the dads didn't feel that they had a voice. 

Steve Taylor: 
Tell me about how the dads’ groups have evolved over time since you've been involved, Steve. 

Steve Smith: 
When I went to the first ones, the dads that were there were just sitting there. There was a moderator who did all the talking. And I realized at that time that wasn't helpful, and I started getting involved after that. They allowed me to start leading some of the groups, and I changed the format to the point where not only did the dads start talking, they started talking to each other. 

But probably the thing I'm the most proud of with the conferences, and there's so many, but is the fact that the dads not only started talking, but are a big part of the planning committee. Now there's a lot of dads on the planning committee. And at one conference, I had a mom come up to me in the morning, after the dads’ session, in tears, asking for me. And it's one of those things where I wasn't sure if I was in trouble or not. And she told me, “Thank you.” 

That last night her husband came back to the room and asked questions about: “Tell me again what this medication is.” “Tell me again exactly the name of what our child has. It's not just arthritis, it's something else, you know, that I can't pronounce.” And if I had to put a pin on the number one thing that happened to me at conferences, that would be it. 

Liz Smith: 
I think that the Arthritis Foundation has done an absolutely remarkable job of putting this summit together in a way that every family member has a place where they fit. 

Steve Smith: 
I started to realize that the conference was actually more important for the siblings and the dads and the opportunity for them to learn and find out they weren't alone. And the moms and the kids just kind of got us there and got things started. It’s become a family event, not just a caregiver and patient event. 

Steve Taylor: 
This is really an encompassing event that brings you there and puts you in the middle of meeting all these people. 

Steve Smith: 
Yes. 

Liz Smith: 
Yeah. When you see the new families each year, when they arrive with the deer-in-the-headlights look, and they leave hugging other parents, and their children are crying because they don't want to leave their new friends, it really says a lot about what that summit does for these families. 

Steve Taylor: 
Our JA programming is, you know, 40 years strong plus. How do you think it's changed over the years you've been involved? 

Liz Smith: 
I think the programming at the summit has improved. I always thought it was good. But I think there's more involvement from parents, teens and young adults now. I think that we have done a really good job of incorporating the issues surrounding mental health and chronic illness in a way that never happened before. So those are two big areas of growth that I see since we first joined in. 

Steve Smith: 
This is the preeminent event for the Arthritis Foundation to show what it's like when the volunteers run the event. 

Steve Taylor:  
Without the volunteers, it would not be possible. And the parents make it. Because we know, they tell us what they want, and that's what's the most important part I think. 

Steve Smith: 
And then they do it, they, which is nice, too. (laughs) 

Steve Taylor:  
Right. Right. Your involvement early on as a parent, how has that made a difference for you? And what would you tell newly diagnosed parents? 

Liz Smith: 
One of the things that really impacted us by being involved was getting to know so many of the physicians and other health care practitioners. Probably one of the biggest ways that it's made a difference for us is that giving back. Because our kids are diagnosed with a disease for which at this time there's no cure. So, you feel pretty helpless. 

But when you start giving back, and you know you're getting involved and you're doing things to help other families, you are helping your child at the same time. So, you are making a difference. Even though you can't make your child better. 

Steve Smith: 
Dads are supposed to fix things. You know, the light bulb breaks, you fix the light bulb. And as a dad, I couldn't fix this. I couldn't fix it, but if I could raise the $1 that put us over the top then I would be able to make a difference. 

Steve Taylor: 
If you could look back at all the conferences you've attended, what's one of the most memorable moments, funny or endearing? 

Liz Smith: 
One of my favorite things was one of the conferences out in California when Matt Iseman did his comedy routine. We laughed so hard. And for a conference that was dealing with an illness that was attacking our child, to be able to sit there at the start and just laugh was a great way to start it out. 

Steve Taylor: 
Obviously our largest, most important, influential award in the JA community is the Steve and Liz Award. How was that? To receive that award. And then know the award would be named after you, a legacy award like that? 

Liz Smith: 
It was shocking, surprising and humbling. Because, I mean, we just do what we do. We never expected anything like that. It was really and truly humbling. 

Steve Smith: 
Liz and I were in the hotel room that night afterwards. And we just looked at each other and went, “They named an award after us.” 

Liz Smith: 
Never would've expected that. 

Steve Taylor: 
Where do you think the challenges are in the future to stay ahead of the curve for JA? 

Liz Smith: 
One of the things that we have to look at is trying to expand access to the JA Family Summit. I also would love to see expanded access to the camps. Expanding those two things and therefore expanding the fundraising. 

Steve Smith: 
We had gotten to a point where we were having two conferences a year, and things were really chugging along. And the pandemic changed all that. My first immediate goal would be to get us back to that level we were. The more people we touch with this, and make them understand that it's for them. 

And you don't have to volunteer if you don't want to. Come and get the information you need to provide something for your family. And those who want to volunteer will do that. 

Steve Taylor: 
That's right. Where do you think you'd like to see juvenile arthritis in the next 10, 15, 20 years? What dreams would you have? 

Steve Smith: 
As Emily got to about 7 or 8 years old, and she started talking about a cure — and she'd been to two or three conferences by then. And she goes, "Well, daddy, if we have a cure, what happens to the conference?" And what I said is, "We'll have reunions." So, in 10 or 15 years, I'd like to have reunions. 

Liz Smith: 
We'd like to have reunions. 

Steve Smith: 
That sums up my feelings on the future. 

Steve Taylor: 
So powerful. Reunions for people to come together and celebrate the cure and the treatments. And that's just powerful. I love that. Because the children deserve that hope and that future, and better treatments for them. 

Because you're involved in CARRA (Childhood Arthritis and Rheumatology Research Association), Liz… Our commitment to CARRA has been over $36 million since 2015. We're committed to making sure that the treatments are safe and correct for children. How is your volunteer work on bigger levels than the Arthritis Foundation? And how has that been for you? 

Liz Smith: 
At CARRA, I'm on a committee with… It's a registry committee made up of parents And then I'm on different workgroups. I think it's pretty neat. Because the voice of the parents is being heard and valued. I guess that's one of the biggest things I've gotten from it is that: We as parents or patients, our voices carry weight; and they are valued. It was just very gratifying to me to be able to do that. 

Steve Taylor: 
Yeah. It's so important to have those voices heard in those committees. 

I can't thank you both enough for all that you do for the Arthritis Foundation on behalf of all the parents and kids that juvenile arthritis programs help. You two have been amazing, dedicated leaders that have made such a difference. And we truly appreciate it. Thanks for joining me, Steve and Liz. 

Steve Smith: 
Thank you. 

Liz Smith: 
Thank you. 

PROMO: 
This year, the Arthritis Foundation recognizes 75 years of progress for the arthritis community. Over the years, we’ve led the way in major achievements, from training rheumatologists, advancing joint replacements and introducing biologics and other breakthrough treatments — to providing life-changing educational programs and resources, like this podcast — to successfully advocating for better health care policies and laws. All to improve quality of life for the nation’s nearly 60 million adults and 300,000 children living with arthritis. Thank you for your support during 75 years of progress. And see how far we’ve come in our interactive timeline at https://www.arthritis.org/about-us/history. 

Steve Taylor: 
Today I'm joined by two pillars of our juvenile arthritis program, Andrea Ring and Dawn Hafeli. Dawn Hafeli was on the leading edge of the Arthritis Foundation's battle against juvenile arthritis. An activist mom in the late 1970s, she drove the formation of the American Juvenile Arthritis Organization. She co-wrote books and guides for parents of kids with JA, fought for laws to protect their educational rights and launched the annual AJAO Conference for JA families. 

AJAO later became the Arthritis Foundation's JA program, and the conference, now called JA Family Summit, still is going strong today 40 years later. This year's conference, Family Summit, will take place in Atlanta, Georgia, on July 20th to 23rd. 

Andrea has been with the Arthritis Foundation for over 20 years, and through her time with us, Andrea has helped to shape our mission programming and patient education offerings for numerous forms of arthritis. In the past few years, Andrea has taken on a new leadership role as senior director of JA programming. 

I welcome both Andrea and Dawn with us today. Dawn sparked the beginning of our JA program back in the 1970s. Tell us a little bit about how you got involved. 

Dawn Hafeli: 
It all began in 1972 when our daughter was born. Even in her first year, when she was about 10 months old, she started exhibiting symptoms of stiffness and pain and fatigue and loss of appetite and things like that. She developed signs and symptoms of rheumatoid arthritis. And we didn't know what it was at the time. 

We were lucky enough in our community and with our pediatrician to be referred up to the University of Michigan, which, at that time, was one of only 20 pediatric rheumatology centers in the country. That really was probably what lit the spark under me to have that quality of care and well-rounded services for our daughter. But I needed more. 

We were active with (the Foundation’s) Michigan chapter and started a support group there. There were other families doing this. One was Arlene Johnson from Ohio and the other was Barbara Barrett from Washington State. Our kids were kind of at a different place with their arthritis, but they all definitely had pretty severe arthritis. 

So, we were invited to come down and meet with the Arthritis Foundation national staff to identify the needs of kids with arthritis and their families. And that really got the ball rolling. The first thing out the door was an education rights booklet. We felt the need to get that out there into the hands of parents. And that was the first stepping-stone of what we got started. 

Steve Taylor: 
Now, obviously back in the '70s, we didn't have biologics. What was your daughter's kind of treatments as she was growing up? 

Dawn Hafeli: 
Well, believe it or not, the only anti-inflammatory on the market that was available for children was baby aspirin. So, she was taking just mounds of baby aspirin. And within another year's time, she had stopped walking again, back into the hospital for a long, extended stay, and they started her on prednisone. You do get immediate relief with it, you just have so many side effects with it. But within the day she was up and walking again. 

When she started kindergarten at age 5, she also started on gold injections. It attacked her kidneys, and she began to go into kidney failure with that. Eventually, the next items out the door were the non-steroid anti-inflammatories. And she was started on those. Methotrexate came on the scene. And that was a crossover drug. Melissa was part of a clinical trial study of children with severe, non-remitting juvenile arthritis to be put on methotrexate. And that immediately made a difference. A couple years down the line came the biologic drugs, and that was a major step forward and really changed the pathway for kids with arthritis now. 

Steve Taylor: 
Just those connections you made between other families and were able to be that connection point. And back in the '70s, there's no internet, there's no Googling, there's no way to find people. How instrumental was that in starting your organization? 

Dawn Hafeli: 
What happened was… the early days of developing what the AJAO was going to be… What were we going to do? And the mission was primarily to help families, to support the families, to bring them more information about our arthritis, to set up support systems for them. 

Those of us who were in the leadership positions… There were three or four of us who were parents; there were many medical professionals who were helping us along the way. But we had an opportunity to attend a conference put on by the Maternal and Child Health Bureau. It was really a first of its kind conference, talking about what was happening in the juvenile arthritis treatment regimen. 

And I said, "We can't be the only ones that hear this. Other parents out there need to hear this. We need to take this concept and build it around families and do some sort of family conference." Our first conference was about 180 people. We kind of wondered, "Are we the only ones that want this to happen?" The other parents did. And we wanted it to be a research element for them, too, as well as the whole social support system. 

Steve Taylor: 
Right, which is so important. And then, you know, fast-forward: Has your daughter seen effects from arthritis. And she's grown? Is she still being treated? 

Dawn Hafeli: 
She is now a walking miracle, walking on two new hips, two new knees, a replaced ankle and a replaced shoulder. But the good news is: She's up and walking. Graduated from University of Michigan. And then went down to Vanderbilt University in Tennessee for her master's degree. And she lives down there now and now works for the state of Tennessee. She wanted to stay working. She wanted to stay active. She just did not want to give in to this. 

Steve Taylor: 
AJAO moved into the Arthritis Foundation. How did that come about? And how do you feel that now, over the years seeing where we've been able to go as an organization, using the footprint that you started? 

Dawn: We kind of approached the national powers that be at the Arthritis Foundation and said, "You know, here's the deal, here's what we really think we want to do, but we want to do it under the auspices of the Arthritis Foundation. They accepted us as a legitimate organization within the umbrella of the Arthritis Foundation. And that made a big difference for us. That gave us also so much power in terms of partnerships and contracts. 

Steve Taylor: 
Andrea, how instrumental was AJAO for the Arthritis Foundation? Your thoughts since you've been now with the organization over 20 years. 

Andrea Ring: 
Oh, it's definitely the foundation for what we're able to still do to this day. And I definitely look up to Dawn as one of the moms of our juvenile arthritis program. And just to be able to also thank her for her hard work and gathering those volunteers all those years ago. 

And next year is actually going to mark our 40th year of that meeting that was held in Breckenridge, Colorado, in 1984. And I'm proud to say that we're going to be able to do it 40 years later and still be able to make those connections and bring medical experts from across the country to speak about research and about disease management. And hold true to what those founding mothers started all those years ago. 

Steve Taylor: 
Andrea, do you want to talk a little bit about how the JA Conference, now called JA Family Summit, has evolved over the years? 

Andrea Ring: 
Something that has definitely evolved in the time that I've been here is further integration of patient engagement. And I'm proud to say we have two teenagers that lead the planning around the teen program. We have a handful of young adults that lead the programming around the young adults. We have parents that lead the moms and the dads and the male and female caregiver groups. 

And what I also like about it is: JA doesn't just affect the child with arthritis, it affects the entire family unit. I always tell people it truly is for the entire family. It's an education program that happens over several days. And people walk away and say that it's life-changing. By the end of that weekend, they felt that they were part of a bigger family that they never wanted to be a part of (laughs), but they are now a part of a bigger family that supports them and holds their hands and has a shoulder to cry on. 

Steve Taylor: 
Share with everyone a little bit about JA camps and what that is, and how those are run around the country. 

Andrea Ring: 
We have 10 in-person camps across the country. And then we also have a virtual camp opportunity that's held in the middle of July. And our camps across the country, some start as young as 7 or 8 years old and go up to 16, 17 years old. And what I love about the camps is: It's for kids with arthritis, but a lot of the counselors and camp directors and camp leadership are also… They were kids growing up with JA. It's a place where they get to climb a rope, climb a wall or be on a ropes course or be able to meet other kids. 

What I love about our camps is that it helps to foster independence. It exposes them to things that they might never get a chance to be exposed to. It's really neat to see them feel empowered and have that confidence and try new things. 

Steve Taylor: 
It's amazing. And for the families to be able to drop their child off at a sleep-away camp that's safe, set up for kids with JA. Obviously, research had advanced a long way. Since 2015, the Arthritis Foundation has invested over $36 million in JA research specifically through our partnership with CARRA, which is the Childhood Arthritis and Rheumatology Research Alliance. Can you just share a little bit about how important our partnership with CARRA is? 

Andrea Ring: 
Our partnership with CARRA has helped with providing expertise for our Family Summit. They also help with engaging those patients, educating patients, around research. I've seen, since I started here, the formation of that organization and how far that has come and the partnership between the two organizations. And how we've really been able to support kids with arthritis and their families over the years. 

Steve Taylor: 
And so, if a person's listening that their child was just diagnosed with JA, Andrea, what resources do we have? 

Andrea Ring: 
We have a program called the JA Power Pack Program that is geared for newly diagnosed children and their families. They will get a backpack that has a book for the parents on raising a child with arthritis. There's a book that younger kids can bring to school and be able to educate their classmates on JA and growing up with JA. We have a book for teenagers as well, for coping as a teenager with a chronic disease. 

And when people get this backpack, or Power Pack, it pulls them into our organization where we are able to reach back out to them and make sure that they are aware of the camps, the Family Summit. We have virtual support groups. 

Steve Taylor: 
Andrea, I would be remiss if I didn't talk about one of the things that, you know, I love about JA Family Summit, which is our Panda Clinic, which is supported and sponsored by Alpha Omicron Pi women's fraternity. They sponsor various activities, and one of them is the Panda Clinic, which is where kids come in and they get a panda. And then, they're able to walk through the various stations to treat their panda with JA. 

They go up to an exam table and a doctor, a pediatric rheumatologist, is literally there to help examine their panda. Then, they go to the pharmacy, they go to a physical therapist, they go through the stations that they would as a child, but now they have this panda that has JA. And they learn how to be a caretaker to this panda. I think it's just a cool program. 

So, I want to go back to Dawn. Dawn, how full is your heart knowing that you helped start kind of this program and how far it's gone since the 1970s? 

Dawn Hafeli: 
I'm just overwhelmed sometimes that everything that's gone on and how much progress we've made. I didn't think I had the power, the energy or the skill to step up and do this. But you just do it. There's kind of three simple rules that we three Moms kind of got together, when we got together early on, and we just said, "You know, if you don't go after what you want, you won't get it. And if you don't ask, the answer will always be no. And if you don't step forward, you will always be in the same place." 

Steve Taylor: 
Sometimes you have to come down off the stands and get on the playing field. You can't just be a spectator. Where do you hope the future of juvenile arthritis goes? 

Dawn Hafeli: 
Well, I think every parent dreams of a cure. A cure really wouldn't help my daughter at this stage. But the cure for her has been that she's found the resources necessary to live a good and full life. I think we need to continue to invest in research. And to continue to step up and encourage parents. I love to think about the fact, where they call the Arthritis Foundation, they get the Power Pack, they find out about camp, they find out about the JA Summit. So much available for them now that I'm really excited about what the future holds. 

Steve Taylor: 
Yeah. And well, thank you so much, Dawn, for being here today. And of course, Andrea Ring, for joining us today on our episode. 

Dawn Hafeli: 
Thank you.

Steve Taylor: 
And to close us out, you'll get to meet a mother and son team who give us their perspectives about the work we're doing to support juvenile arthritis patients and their families. 

PROMO: 
For kids and families dealing with juvenile arthritis and related diseases, the Arthritis Foundation provides support, opportunities and information you can trust. From our JA Power Pack to the JA Family Summit, from JA camps to a support group for parents, and more, count on us to help out. Learn more by going to https://www.arthritis.org/juvenile-arthritis. 

Steve Taylor: 
Shane Cox and his mom, Jenn, have been involved with the Arthritis Foundation for close to 15 years, since Shane was first diagnosed with juvenile arthritis. Their commitment to the Foundation and to other families with JA has been unshakable. Together, they co-chaired the 2021 National JA Conference, now known as the Family Summit, taking part each summer. And they have been active in local camps, family days and more for the juvenile arthritis community. 

Shane now reaches out to newly diagnosed kids who are struggling, just as he did when he was first diagnosed. He helps mentor them and show them by example that they may have JA but it doesn't have to have them. And Jenn has also equally been involved nationally on various committees and helping us throughout our JA movement, helping all of those moms and parents as they struggle to find their journey with their child with juvenile arthritis. It's an honor to have both of you here today. 

Jenn Cox: 
Thank you for having us. 

Steve Taylor: 
Jenn, why don't you share how Shane was diagnosed. 

Jenn Cox: 
It was 2009. For about six months or so, he was having just weird issues. He was having spiking fevers. He was having unexplained pain. I was constantly taking him into the doctor. He was being tested for various things like Lyme’s disease, cancer, thyroid disease. 

And I took him in one day for something unrelated to what those symptoms were and stuff. And the nurse practitioner in my pediatrician's office noticed he was having a hard time getting up onto the table and asked him a couple questions. She goes, "You know, I'm going to send you guys to get some blood work and some X-rays done. I think that he might have juvenile arthritis." 

I didn't know what that was, and so she sent us off and confirmed that that's what he had. It was kind of a blow sitting in that office being told that your child is going to have to be dealing with a chronic condition for the rest of his life. They started him on meds. We were told that he would immediately have to stop playing baseball because they wanted to preserve his joints. 

Besides the shock and everything, one of the most valuable things that came out of that visit was the rheumatologist made sure to tell me to go visit the Arthritis Foundation website. That there was a local office here in San Francisco, and reach out to them because they had a lot of information and resources that they could help us with. 

So, going home, I immediately jumped on to the Foundation's website, and I came across a video for Camp Milagros, which is our local JA camp. And I told Shane I would send him the next summer, and that's what we did. And that sort of just snowballed.

Steve Taylor: 
Let me jump to Shane. That snowballed into kind of your involvement with the Arthritis Foundation, which has been amazing. And I didn't mention in your bio, but you're the first mother/son duo to chair a JA Conference. But Shane, now you're college-age, you're out of high school. Do you remember being diagnosed? 

Shane Cox:
Yeah, I remember being diagnosed. I remember thinking to myself that, like, I was only a couple weeks out from my birthday. I was technically 9 years old when I was diagnosed. Everything was pretty fuzzy. 

Toward the tail end of elementary school and into middle school, I still had a very tough time, still very sick, still struggling. I could barely do PE, I could barely get around. Eventually we got my medications right. And from about sophomore year until senior year, I never had really any issue. I mean, I obviously had small flare-ups and stuff like that. But I was able to do whatever I wanted. And that was kind of the turning point for me. I started to actually feel good, started to actually be myself and not have the arthritis kind of control my life. 

Steve Taylor: 
Now, I know you went to camp. And you've been to conferences before you chaired. Any memorable moments or advice you got during those times at those conferences or camps? 

Shane Cox:
I've always been what I guess my generation calls an old soul. I always related to the adults more than the kids. But one of the biggest things from camp, learning from camp, is that I need to, no matter what, be able to communicate and have fun with my own age group. So, they, the adults there, forced me to do that, but also, you know, said, like, "Hey, we are here for you." That was a big thing. 

Steve Taylor: 
Yeah, I think also a diagnosis tends to make you grow up a little faster, too. I'm sure, Mom, you would agree. What memorable moments do you have of Shane taking part in those things? 

Jenn Cox: 
It was two things. The summer of 2011 was he got to go to camp. I was hesitant to drop him off. But after picking him up, I mean, the first thing he said to us was that, "I'm coming back here next year." And then a few weeks later, we were fortunate enough to go to our very first conference. And for him to be able to connect with and talk about things with kids that were going through exactly what he was going through was a huge sense of relief. We found our new family. 

Steve Taylor: 
The kids love to look up to Shane. The parents look up to him. He also had a great relationship with my predecessor, Ann Palmer, who took him on as well. And we appreciate Shane stepping up and being such a leader for the organization. I don't know if Shane appreciates how much his presence matters to people around him. 

He definitely has that quiet, giant rockstar mentality that he does not know himself, which makes him so cool, because he doesn't know that, but it makes other people drawn to him, to get attention. So, Shane, because you've done so many things — from mentoring and helping other kids and talking to kids, chairing the conference, all those things — what do you think volunteering has done for you? 

Shane Cox:
Obviously, it's made me a bit more outgoing. And from a younger age, I personally looked up to the people that were going up on stage and speaking. And then the biggest thing that I take away from it is: I'm fortunate enough that I'm not in a wheelchair and, you know, now, thank God, that it's only 10% of kids with arthritis that go to the conference are in a wheelchair. 

I mean, I do have daily struggles and daily pain that I just try not to let other people know about. Just kind of being strong for other people and letting them know, like, "Hey, yeah. You don't have to necessarily hide it as much as I do. But you can live a normal life and not have people judge you for having a disability." 

Steve Taylor: 
Now, Shane, do you mind just sharing how old you are with the audience? 

Shane Cox:
In July, right after the conference, I'll be turning 23. 

Steve Taylor: 
Jenn, can you share kind of the trajectory for you and Shane before you became chair of the conference in 2021?

Jenn Cox: 
We did our first camp, our first conference, we did our first walk within that first year. We really kind of dove headfirst into all that. We went to a couple of local JA days. I'm in the San Francisco Bay area, and I started wanting to give back early on, just because of the huge impact from the get-go of the benefits that we saw as a family, and more importantly, for Shane. And to say thank you to the Foundation. Because the Foundation from literally day one has been there for us. 

I dove in the most initially and was dragging the family along. But they've all benefited and have grown to appreciate and want to give back as well. It's just been a huge impact on our lives that we are forever thankful for.  And we want to be able to do that for other families. 

Steve Taylor: 
How was stepping up and being chair of the whole conference? 

Jenn Cox: 
Ann Palmer was just enamored with Shane from the get-go. And so, at conference each year, we would have a one-on-one meeting with her. We had our meeting the summer of 2019, and she brought him in and… I think we jokingly had said before going into that meeting something along the lines of, "She better not ask you to be the chair (laughs) or something." Don't you know that that was the nature of the meeting. 

We were honored. And I was just so incredibly proud of Shane for Ann recognizing, and the Foundation recognizing, Shane's leadership. And for him to be that first young adult, co-chairing it with me, was just huge. We both took it and ran with it. We were really bummed that it wasn't in person, but I still think that we were able to make a big impact. I'm extremely proud of him and was honored to be able to co-chair that with him. 

Steve Taylor: 
What's impressive is: We were able to still pull it off during COVID, the conference, because it's so important to our families. Shane, what are your thoughts on chairing, and your memories of being able to handle all that being thrown at you — from technology to running a conference of that size, agendas, speaking, all of those kind of things? 

Shane Cox:
Well, speaking comes fairly naturally to me at this point, so the speaking part wasn't that hard. I had always wanted to be the juvenile arthritis national honoree. Being the conference co-chair, and stepping up and doing that, kind of fulfilled that dream a little bit: of being in the national limelight. 

Steve Taylor: 
What's next for you, Shane? I know you've had juvenile arthritis since 2009. You've graduated high school. What have you been up to? 

Shane Cox:
End game is: graduate college. I got one more semester left. So, finish up college. Start my own life at this point. I don't know what that means quite yet. I'm just ready for whatever comes next. Just continuing to do stuff with the Arthritis Foundation. 

Steve Taylor: 
Jenn, back to you as a mom. I want to give you and Rick credit. I mean, I'm sure you turned over stones and made things happen to make sure he got the best care and treatment. But isn't it exciting to hear him, I'm sure, talk about that? 

Jenn Cox: 
We're both so incredibly proud of him. Despite all that life has thrown him, he's been able to tackle everything head-on. And we're excited to see what the future holds for him, most definitely. 

Steve Taylor: 
Shane, what's the one bit of advice you'd give to a newly diagnosed kid with JA, whatever age that might be? What do you think you would tell them or their parents? 

Shane Cox:
What I'd tell them and what I'd tell their parents are going to be two separate things. What I'd tell the parents is: It's going to be OK. And to the kid is that it's going to be tough. You’ve got to deal what the cards were dealt. And always look at the brighter side of it. I wouldn't be the person that I am today without my arthritis. It's a double-edged sword when it comes to arthritis. So, they'll be OK, but it's going to be tough. 

Steve Taylor: 
Jenn, what would you say to parents, moms or dads? What would be your one bit of advice? 

Jenn Cox: 
Your blood family that you have, they're there to love and support you. But reach out to, you know… Whether it's JA or whatever chronic disease or illness, there's a community for them. And reaching out to that community and leaning on those people for support is huge. Look to the Arthritis Foundation. Because you guys have so many great resources available online. And don't be afraid to ask for help. 

Steve Taylor: 
I just want to thank Shane and Jenn again for joining us today on this episode. Thank you for sharing your personal story, your advice. And I know that I'll see you both at Family Summit in July. And thanks again for being part of this episode. 

Shane Cox:
Thank you. 

Jenn Cox: 
Thank you. 

PROMO: 
Do you have an idea for a topic you’d like to hear discussed on the podcast? Do you have a question about an episode or feedback you’d like to share? We’d love to hear from you. Just email us at [email protected] and we’ll get back to you as soon as we can. That’s [email protected]. Thanks for listening! 

Steve Taylor: 
This episode is part three of our special podcast series honoring the Arthritis Foundation's hallmark anniversary. Special thanks to our guests in this juvenile arthritis episode: Steve and Liz Smith, Jen Cox, Shane Cox, Andrea Ring and, of course, Dawn Hafeli. Thanks for listening to the Live Yes With Arthritis podcast. 

PODCAST CLOSE:      
The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. This podcast aims to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!