20 Years of Lupus Advocacy: Q&A with Adam Selkowitz

July 27, 2023

Adam Selkowitz co-founded Lupus LA in 2000, with renowned rheumatologist Daniel J. Wallace, MD, and a dedicated group of patients and parents. Under his visionary leadership and unwavering commitment to the lupus community, Lupus LA has grown to become one of the nation’s top independent lupus organizations!

Adam’s legacy includes raising millions of dollars for lupus research, initiating the now comprehensive patient service programs that Lupus LA provides to patients around the world, and creating the Lupus LA Ambassador Program, which harnesses the power of Hollywood to increase awareness of this devastating autoimmune disease. 

After over 20 dedicated years as Chairman of the Board, Adam Selkowitz will move to a new position as Founding Chairman and remain an active member of the Lupus LA Board! Adam will also continue in his role as the host of Lupus LA’s #YourStoryOurFight podcast:

“It is with great pride and excitement that I am able to turn the Board leadership of Lupus LA over to two incredibly qualified and passionate women. Maurissa and Stacey have the vision and dedication to continue the success of Lupus LA, and to break new ground with a fresh perspective. My 20 years with this organization has given me the opportunity to work with and serve a community that I am in awe of and for that, I will always be grateful.” – Adam Selkowitz

Today, we’re celebrating Adam’s lupus legacy by diving into some of his key insights, top moments, and hopes for the future of lupus advocacy! Read on below: 


Susan Bazarsky, Executive Director, Lupus LA: Hi, Adam! What motivated you to get involved in lupus advocacy and become one of the founders of Lupus LA?

Adam Selkowitz: I didn’t really have a choice! When I had my first appointment with Dr. Wallace 23 years ago – or 22 years ago – I had told him that I was doing some event planning as one of my side jobs in New York, and he said, “Great, why don’t you help me start Lupus LA?” and I said, “All right, well, I need a doctor!” It felt like the right thing to do, and when I met the initial group of seven or eight people, most of whom had lupus or had a child with lupus, I felt very much like I was at home. These were a really incredible group of advocates that wanted to do so much more for the lupus community, and lupus research at large, that it really took off very quickly.

Susan Bazarsky, Executive Director, Lupus LA: After 20+ years in this space, how has the landscape of lupus awareness and research changed over the past two decades, and how has Lupus LA contributed to these changes?

Adam Selkowitz: Well, Lupus LA was really involved in research – primarily research fundraising – for its first, I don’t know, six to ten, six, seven years – and we were helping the then SLE Foundation start their Lupus Research Institute, which focused on novel research ideas – so new ideas that had not been tried before, a little out-of-the-box thinking. I always think Lupus LA has been a little bit of a “swim against the stream” kind of an organization.

Our name says Lupus LA, but we’re really national and global in reach, and I think part of that is just our approach. We want to fund innovation, and we want to fund exciting ideas and exciting researchers. That led us to really experience the lupus landscape as it was 20 years ago, and help craft the energy behind how we approach this disease. I think what you see now is really big research organizations like the LRA and the LFA putting lots and lots of money in, and turning that into lots and lots of government money from the NIH, and so, the machine has really taken over, which has allowed us to focus more on patient relations and patient services – and that’s opened up a whole other area for Lupus LA that we never really set out to do, but has become kind of our bread and butter.

Susan Bazarsky, Executive Director, Lupus LA: Yes, and there’s so much need. The more need that we find, the more that we lean in! You’ve been in this leadership role for quite some time. Now that you are transitioning into a different role with the organization, what are your hopes and aspirations for the future of Lupus LA?

Adam Selkowitz: Well, I’m extremely excited about the new leadership team. Maurissa Tancharoen Whedon and Stacey Uberstine are both just so energetic and so committed, and really understand where the potential is in Lupus LA. The pandemic really changed us a lot. I think in some ways we’ve grown tremendously. Our online reach is stronger than it’s ever been before, and we’re really helping people all over the world, but we took a hit in terms of our local support and our local participation because we had to stop our in-person events and things like that. I think what you’ll see from Stacey and Maurissa is a refocusing back to bringing the people of Los Angeles together to support Lupus LA. I think that the incredible support we’ve gotten recently from the pharmaceutical companies and from corporate sponsorships is allowing us to reach so many more people than we were ever able to reach before.

I think getting back to our celebrity ambassador program is also going to play an important role in continuing to tell the world the story of lupus. When I started, my mission (or one of my primary missions), was to tell the story of lupus. I grew up as a 16-year-old kid getting diagnosed with lupus. This was before there was internet, before I could find anybody else that was like me, and I think when I moved here to Los Angeles (and I’m in the entertainment business), I said, this has to be the way to get more people to understand what this disease is about. I feel really proud of what we’ve been able to do. I mean, we’ve had literally billions and billions of media impressions over the last 20 plus years. Thanks to people like Michael B. Jordan and Melissa Joan Hart and Sharon Stone and Paula Abdul and Toni Braxton – they’re all just incredible talent, and have such a large voice. When you can reach so many people in this world through social media and TV and magazines, it’s just made a big difference. I can tell you, tangibly, when I was first diagnosed, I could say to somebody, “I have lupus,” and nine out of ten people would say, “I’ve never heard of it.” Now, I think that number is down to one out of ten – two out of ten. I mean, that’s not a scientific study, but I can tell you that I believe that some of the work we’ve done has drastically changed the landscape for those getting diagnosed today.

Susan Bazarsky, Executive Director, Lupus LA: Yes, I agree. What are some of your top memories during your time with Lupus LA?

Adam Selkowitz: I think I can remember our very first event. It was in Malibu, in the backyard of a private home, and we had Howie D. from the Backstreet Boys, and this was 2000, when they were the biggest, best group in the world and in this really intimate setting. We raised $75,000, and we were over the moon! Looking at that and where we’ve come now – and having events on the Fox Lot honoring Michael B. Jordan and on the New York street with 400 people and Seal performing – those are some incredible moments.  I’m very proud of the fact that this board of leaders has remained steady. I mean, a lot of these people have been with this board for a very long time, and I have a lot of memories with them of going through sort of the ups and downs of this organization together. A lot of them are my mentors, both in the entertainment field and in the lupus and philanthropy fields. I think this organization is truly made up of amazing people. 

Then, the other memories I have are of these patients. When we started the support group at Children’s Hospital, I remember going to visit them. We had an annual holiday party, and I would go, and I sat in on the teen support group, and I couldn’t believe how receptive these kids were to this support group. I thought, when I was diagnosed, there was nothing like this, and now we’ve created this avenue for these kids to not feel like they’re alone. I would sit down and they would ask me, “how did you go to college with lupus and what did you do?” And after I got married, I brought in my wife and I said, “Look, you can get married to a beautiful woman or whoever you want to marry!” I think it really gave these kids a lot of hope, and to this day, they are still participating in Lupus LA activities. They’re still online with us. They’re still benefiting from the work we’re doing – and you don’t always see that in sort of the “profit and loss” of running a charitable organization. But I think just hearing what our patients get from the work we’re doing is so rewarding, and I know our entire board really appreciates that and feels that our patients are at the heart of this organization. 

Susan Bazarsky, Executive Director, Lupus LA: I mean, I agree 100%. This board is like a family. The commitment that you all have made to this community is infectious – it has been for me and for our team, and it’s very special. It’s very unique. Now that you’re going to be in the position of Founding Chair, how do you see yourself contributing to the mission of Lupus LA or the broader lupus community beyond your chairman position?

Adam Selkowitz: Well, I don’t know life without Lupus LA, since 20 something years, almost half my life! I have a new role at Cedars Sinai as chairman of their board of governors, and the work that Cedars Sinai is doing in support of autoimmune illnesses and rheumatology and innovation is light years ahead of where I ever thought it would be, and it’s incredible. So, one of my goals is to try to really marry Cedars and Lupus LA, to have us be able to support the work they’re doing, and vice versa. I think that’s one of the ways I’m going to stay involved, but I can’t help dipping my toe into the event world. I was thinking about it the other day – every event this organization has ever done, I have been there and I have been a part of the planning, so I don’t know what I’ll do if I can’t actually sort of express my opinion. People may not like that all the time, but I intend to be a vibrant member of this board! 

I also intend to keep hosting the #YourStoryOurFight podcast, which has been such a gift for me in terms of being able to connect one on one with all of the people I’ve spoken to. We’ve done over 50 episodes, and we’re going to gear up to start Season 3 in the fall, so I think that’s one of the ways I’ll stay connected! 

Susan Bazarsky, Executive Director, Lupus LA: I also see you staying a mentor and a supporter of, not just myself and the staff, but really supporting Stacey and Maurissa as they get their footing in the position because it’s a big undertaking, and I know they feel that they have very big shoes to fill!

Adam Selkowitz: Well, I think an organization probably should not have a chairman of the board for 20 plus years, but we’ve been through so many twists, turns and changes – it just never seemed like the right time to exit or exit that role. Now, I feel like this organization is in such good hands, and I think the benefits of new leadership really outweigh whatever negatives there may be! I’m absolutely there to help both of them whenever they need it or to be hands off whenever they want to run in a different direction. I think they are going to have so many interesting twists, turns and ideas to really give this organization superpowers – especially since Maurissa is in the superhero business –  so I know that she’s going to bring that excitement and level of energy, and if anybody knows Stacey, she’s going to be right there with her. So I can’t wait for what’s next! 

Susan Bazarsky, Executive Director, Lupus LA: Is there anything that you’d like to say to our lupus community as you transition away from this leadership role?

Adam Selkowitz: I know this organization is in such good hands with you as the executive director, and I feel so much like this community does not have to worry. This community is going to be well taken care of by Lupus LA. What I would say is, I would really encourage this community to get more involved, to do more with us, to raise your hand and say “I want to volunteer,” or “I want to help,” or “I want to be a part of this board or this gala committee or that event committee.” I think participation is undervalued sometimes by the people who are participating. 

I think you will be surprised what you get out of this organization if you join us, and if you don’t want to show up to a meeting or an event, then donate! Because when you donate to Lupus LA, we take very good care of your dollars. With more dollars, we can create more opportunities. We can help more lupus patients and we can worry less about the bottom line, and more about the patient’s bottom line! 

I hope that this is a turning point for the better – an opportunity for more people to come out of the woodwork or come back to us! If you attended our Bag Ladies events or you’ve attended the Gala or MBJam, then come back! We just did an event last spring, the Stories Under the Stars event – that was incredible, and we need your support. We need your help, and I know Maurissa and Stacey will appreciate it, as will the rest of the board!

To learn more about Lupus LA’s incredible Board of Directors, please visit lupusla.org/board-of-directors

To learn more about getting involved with Lupus LA’s leadership, Medical Advisory Board and more, contact our team at info@lupusla.org