Lupus LA is pleased to announce the appointment of writer and producer Maurissa Tancharoen Whedon and businesswoman and lupus advocate Stacey Uberstine as the new Co-Chairs of its Board of Directors. They will succeed Adam Selkowitz, who co-founded Lupus LA and has been instrumental in leading Lupus LA for over 20 years!

About our Co-Chairs: 

Maurissa Tancharoen Whedon, an LA native, found her way to television through music, dance and theater. With her husband and writing partner, Jed Whedon, she created and appeared in the Emmy-award winning musical Dr. Horrible’s Sing Along Blog. She also co-created and served as showrunner and Executive Producer of Marvel’s Agents of S.H.I.E.L.D., which ran for seven seasons on ABC. Her advocacy for diversity and her passion for stories that center and celebrate women are reflected in her work. Living with lupus since her teens, she actively raises awareness and funds for the cause. Maurissa enjoys hip-hop classes and making music with Jed, while cherishing time with their daughter, Benny Sue.

Stacey Uberstine is a dedicated mother and businesswoman. Her career highlights include helping to establish the Industrial Care Center at San Pedro Hospital and running her own successful State Farm agency for over a decade. In 1994, Stacey was diagnosed with lupus, driving her support for Lupus LA and dedication to patient advocacy. Stacey and her family are also avid sports fans. Her husband is a prominent sports attorney, repping some of the most iconic figures in professional sports. Her twin sons have a passion for sports as well – Grant was an avid athlete in high school, and Tyler played baseball at Northwestern University and was later drafted by the Boston Red Sox.

Q&A Interview: 

Susan Bazarsky, Executive Director, Lupus LA: Hi, Stacey! I’m so excited to talk to you about becoming one of the new Co-Chairs of Lupus LA! Tell me about your journey and why you chose to take on this leadership role.

Stacey Uberstine, Lupus LA Co-Chair: My journey began, in regards to the board, when you and I met. I had been at fundraisers, I’m a donor, I’m a patient – for many, many years. Then, Susan, when you became the executive director, you and I went to lunch and I was really impressed with the direction that you wanted to take the organization, and thought that we could make a great team! I love working with you and the organization, and I’ve really watched a lot of growth over the years, and I’m very excited about taking the organization to the next level.

Susan Bazarsky, Executive Director, Lupus LA: Hi, Maurissa! Congratulations on becoming the new co-chair of Lupus LA. Can you tell us about your journey with the organization and what motivated you to take on this leadership role?

Maurissa Tancharoen Whedon, Lupus LA Co-Chair: Well, firstly, I’m thrilled and honored to be here, and to be working alongside Stacey and you and everyone else on the board – everyone else on the team. I had attended Lupus LA’s events over the years, and I’ve always been so impressed by their advocacy and by all the wonderful people that I’ve met in the Lupus LA community. I’ve especially appreciated their areas of focus, because that speaks to me as a patient. I’m a lifelong lupus warrior. I’ve had lupus for three decades now at this point. So, the strength of Lupus LA’s patient outreach and their support is something that I personally have depended upon over time. So now, to be in this very awesome position, I hope to further that in a way, in working together with all of you!

Susan Bazarsky, Executive Director, Lupus LA: I think what’s so special is that you both come to this – not just as patients – but as people who have attended events and who have been part of the organization. So, to have your own vision and your own goals and to bring them into this changing and growing organization is very exciting! It’s very exciting to me and for the rest of the board and the staff, because it sort of breathes new life into the work that we’re already doing.

Susan Bazarsky, Executive Director, Lupus LA: I think that’s what is very unique about our board, is that there are several people (if not all people on the board) that have either a personal connection to lupus or an experience with lupus or other autoimmune diseases. So, I think just having that personal touch in our organization is just so important to me. It’s why I was drawn to the organization in the first place. I always describe this board working, having worked with other organizations, is that everyone on this board is either a patient or a parent of a lupus patient, and the commitment and the passion to serve this community is super personal. It comes out in the way that we treat our patients and the way we treat the community.

Stacey Uberstine, Lupus LA Co-Chair: Yes. The personal experience. I think everyone on the board, whether you’re a patient or a caregiver or parent, has personal experience. It’s not just from a textbook – this is hands on – and I really think that differentiates us from other organizations that are much larger and have a huge board.

Susan Bazarsky, Executive Director, Lupus LA: Yes, I agree completely. What are you both looking forward to in the year ahead?

Stacey Uberstine, Lupus LA Co-Chair: One of the things that I’m super excited about is really reintroducing ourselves to the community post-COVID. We really have been online, but it’s been very difficult for Lupus LA to survive. I’m proud to say we did survive COVID, so getting out there, reintroducing ourselves. I think there’s a lot of change to be had, a lot of great change. I’m super excited! One of my passions really is raising awareness for lupus and letting people know that no one fights alone – we are here for you. And providing advocacy services – those really are my passions within the organization to work on.

Susan Bazarsky, Executive Director, Lupus LA: Maurissa, what are you most looking forward to in the year ahead?

Maurissa Tancharoen Whedon, Lupus LA Co-Chair: Having some fun with our community! Along the lines of what Stacey was saying, it is sort of getting us back out there, getting us back out into in-person events and the community. Obviously this goes without saying, the pandemic was so challenging for everyone in the entire world and specifically for Lupus LA, but there was a bright side in that we switched to online, and we were able to expand our outreach quite a bit. I think, what we can do now is take what we’ve learned and take that outreach and how we’ve built that growth in our community, and now we can implement that into more in-person tools and events and such. So that’s what I’m looking forward to!

Because Stacey and I are patients ourselves, I think we can bring our personal knowledge. Don’t get me wrong – lupus will blindside you no matter how long you’ve lived with it and no matter how you’re able to process it and understand it – but I do think together we can take what we’ve learned over the years as patients, as survivors, and with the organization just sort of share our knowledge and our experience with the entire community. That’s what I look forward to!

Susan Bazarsky, Executive Director, Lupus LA: I love that. As patients, and as members of the community, what would you say makes Lupus LA unique?

Stacey Uberstine, Lupus LA Co-Chair: I think there’s a lot of things that make us different. First and foremost, I think our patient services, they’ve really expanded, and as Maurissa said, from the pandemic, our digital content has a reach internationally. We offer emergency grants, we support future doctors, we’re supporting medical fellowships and we’re involved with research. Our patient support, I think hands-down is the best. As Maurissa said, we’re coming from our own experiences, and if we can help people with the things we have gone through personally and make their journey a little easier, that’s great.

Susan Bazarsky, Executive Director, Lupus LA: Maurissa, what is different about Lupus LA or maybe the experience you’ve had with other organizations?

Maurissa Tancharoen Whedon, Lupus LA Co-Chair: I really appreciate Lupus LA’s size because, to me, I feel like our ability to do things more on a ground level, on a personal level, there’s a strength that we have that I think other organizations do not. We all have the same goal, and that is to find a cure, obviously, but I do think we have that personal touch. I do think that is really one of our greatest qualities. I think we’re really going to hit the ground running with new innovative ways to further expand our outreach. I just know, myself, because I have lived with it for so long, I’ve had a long time to process what it means to live with a chronic illness and I’ve talked to so many people over the years because I’m not shy about it. I’m not shy about what I’ve lived with, I’m not shy about what I’ve been through. I’ve had so many flares over the years of pretty much every organ, and I’ve shared that experience with so many newly-diagnosed people. I do think that is the scariest part. Suddenly, your life has been turned upside down, and I do think our community support groups and stuff is something that is very helpful for people who are newly diagnosed. So, I just hope that me and Stacey can bring our personal knowledge to what we’ve dealt with when we were diagnosed, how we’ve survived it, and bring that to those support groups, too, or other avenues of showing support.

Susan Bazarsky, Executive Director, Lupus LA: I think one of the things that’s so important that our board has, that you guys have, is respect for the community. I have tremendous respect for our community. So, you’re right, there is a challenge in being small in one area, but on the other hand, there is very little bureaucracy. We communicate within the board. We make decisions and serve the community in a way that we feel they deserve to be served. Having the both of you lead in this new time and new year is exciting to me because I think one of the many things that we have going for us is that we are very nimble. We’re flexible, we’ll take on something new. If a patient has an idea or a support group, the board is so incredibly supportive and were able to pivot, which I think was a very big part of surviving during this pandemic.

Susan Bazarsky, Executive Director, Lupus LA: What message would you like to send to the lupus community as you step into this new role as Co-Chair of Lupus LA?

Stacey Uberstine, Lupus LA Co-Chair: That I’m honored to be in this role, as well as being side by side with Maurissa! One of the things I want to tell everyone in our community is that nobody fights this alone and we are here for you! I think that’s also another thing that makes us different than other organizations is that with our size, as Maurissa mentioned, we are able to have that one on one connection with patients, which to me, is invaluable. If we can make a difference in those people’s lives, then we are a success.

Susan Bazarsky, Executive Director, Lupus LA: Maurissa, what message would you like to send to our community as you step into this new role as Co-Chair of Lupus LA?

Maurissa Tancharoen Whedon, Lupus LA Co-Chair: Well, my partner Stacey definitely covered it. Like, I’m just going to echo her. If you’re out there and you’re struggling with a new diagnosis, or just struggling with symptoms, you are not alone. We are here for you. We are going to do everything we can to work towards a cure, while also having fun and bringing our community together! I am just so beyond thrilled to be here, to be healthy enough to take on this role, and so I am going to milk this healthy streak for all that it’s worth! We’re going to have a great year ahead.

Susan Bazarsky, Executive Director, Lupus LA: Thank you both! I’m so looking forward to working with the two of you. I know how passionate you are about this community. I’m excited about this team, and I’m confident that we’re going to do not just great things, but important things, that serve this community!

About Lupus LA

Lupus LA, a global non-profit health organization located in Los Angeles, was founded in 2000 by a concerned group of lupus families spearheaded by world renowned rheumatologist Daniel J. Wallace, MD. Lupus LA raises funds in three core areas: patient services and support, medical research, and fellowships, and promoting lupus awareness and advocacy. Lupus LA has raised over $13,000,000 for the cause to date and, as of March 2020, has reached nearly 4 million patients and their caregivers globally.

About Lupus

While lupus is widespread, awareness and accurate knowledge about it are lacking. Research shows that although 1.5 million people in the United States have lupus, nearly two-thirds of the public knows little or nothing about the disease. In fact, more Americans have lupus than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis, making it one of this country’s most prevalent medical problems. In Los Angeles County alone, there are over 60,000 people suffering from lupus.

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!