Everybody on the dance floor: Guests attend the 2019 Lupus LA Orange Ball at the Beverly Wilshire Hotel on May 4, 2019 in Beverly Hills, California.
Emcee Niles Fitch speaks onstage during the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel
BEVERLY HILLS, CA (LA ELEMENTS) 5/11/2019 – “When I was 12, my father passed away, from lupus,” says Niles Fitch one of the stars of the hit TV show, This Is Us. “And I didn’t know what the disease was and I didn’t have much knowledge about it. So when I moved to LA and saw that there was an organization dealing with Lupus, the disease that took my father away from me, I wanted to help. That turned into me becoming an ambassador, spreading awareness and going to events for three years straight, helping in this battle to find a cure for lupus. I’m here tonight to host and that means a lot to me. This organization is close to my heart. To be able to be put in this position to where I can spread awareness and help others, means a lot to me.”
We caught up with Fitch on the orange carpet for the 19th annual Lupus LA Orange Ball Gala, which was held on May 4, 2019 at the Beverly Wilshire Hotel. This year’s theme was “A Modern Supper Club.” The elegantly attired guests were treated to cocktails, dinner and dancing, with music courtesy of West Coast Music’s Encore. Attendees also had a front row seat to inspiring speeches from those struggling with lupus, as well as those on the frontlines of fighting this disease whose cause is unknown.
Patricia Castillo shares her journey with lupus at this year’s Lupus LA Orange Ball Gala
Part of the frustration of dealing with lupus is due to the fact that it is often misdiagnosed. This happened to Patricia Castillo, one of the speakers at this year’s Lupus LA Orange Ball Gala. At the time of diagnosis, Castillo revealed that her condition had deteriorated to the point where hospice services were recommended.
“When they finally discovered that I had lupus, I was dying,” says Castillo. Through the course of many many years, lupus has attacked almost every major organ in my body. I’ve had four heart attacks. I’ve had three hip replacements, two knee replacements and major back surgery. Huge amounts of steroids have caused me to develop uncontrollable diabetes. Between systemic lupus and the side effects of the medications used to treat it, my body has been greatly damaged.”
The turning point for Castillo, one that restored her quality of life, was being placed in the Benlysta trials by Doctor Daniel Wallace, founder of Lupus LA. Introduced in 2011, Benlysta was the first new drug to treat lupus in 56 years. “So eight years ago, I started the Benlysta trials. I did not know that my life would change forever. I responded to Benlysta immediately. I began to breathe better. Sores in my mouth and my nose ceased. My fatigue and joint pain felt better. Before Benlysta, I spent a few weeks in the hospital every year. The long hospitalization stopped when I started Benlysta.”
“Well, look at me now. I feel great, I’m a happy wife and a busy grandmother. My family and friends cannot believe the transformation. I live my life in gratitude. I decided long ago that I would not be a victim but a survivor. I would be a warrior. I live my life by the code of the samurai, which is, ‘It is not the quantity of breaths that you take in your life, but it is the quality of each breath.’ Benlysta has given me that quality of life. This is why I am so honored to present this award on behalf of everyone who suffers from this devastating disease. I now proudly award GSK with the 2019 Medical Visionary Award.”
Sheri Mullen accepts the Medical Visionary Award for GSK onstage during the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel on May 4, 2019 in Beverly Hills, California.
Sheri Mullen, the Vice President of GlaxoSmithKline, Immunology and Rare Diseases Business Unit accepted the Medical Visionary Award. “To Lupus LA , we at GSK are honored to receive such a special recognition and more importantly, to collaborate with you on patient outreach, on education and on awareness,” said Mullen. “My team speaks so highly of the ‘Latest on Lupus’ educational conferences, which are some of the biggest and largest most successful outreach programs out there.”
“We’re excited about the new awareness of the reach of the programs through ambassadors such as Toni Braxton and other celebrities. That is extremely impressive. And last but not least, I would like to commend our fellow honoree Toni Braxton. It really is an honor to share this recognition with her. She is such a shining beacon of hope and light to all people living with lupus but especially to those women of color and we know that women of color suffer from lupus up to three times as much as Caucasian women. We have yet to discover the cause of lupus or to discover a cure. And the average time to diagnose still remains six years and that’s far too long.”
Mullen noted that it took almost 14 years of development and investment to produce Benlysta, the only medicine developed and approved specifically for lupus in more than 50 years, and expressed her conviction that other medical treatments will be produced quite soon. “Lupus researchers are making great strides in understanding the fundamental nature of the disease and I am very optimistic, very optimistic, that we will see more treatment options in the not so distant future. My message to people living with lupus is this: We are in this together. We are in your corner. At GSK please know that there are hundreds of people, there are researchers, scientists, rheumatologists and other experts working on your behalf. We are absolutely committed to finding the most profound effect for this disease, remission and we all hope, one day a cure. On behalf of GSK, we thank you again for this recognition.”
Lupus LA Chairman Adam Selkowitz speaks onstage during the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel on May 4, 2019 in Beverly Hills, California.
The guest of honor at 2019 Lupus LA Orange Ball Gala, was award-winning singer-songwriter, Toni Braxton who was scheduled to attend. However, Lupus LA Chairman, Adam Salkowitz, announced that due to a death in the family, Braxton would not be attending. Salkowitz accepted the Loop Award on Braxton’s behalf stating, “Toni is a true lupus hero. She’s one of our most important ambassadors and she shares her lupus story and her appreciation for Lupus LA openly and very publicly. Toni first disclosed her disease right here on this very stage at our 2010 Bag Ladies Luncheon and she became an instant voice for lupus patients all over the world. Toni is a dedicated advocate and powerful influencer in the lupus community and we send Toni and her family all our love.”
Salkowitz also shared with assembled guests the exciting developments within Lupus LA including the appointing of Susan Bazarsky as the organization’s executive director, as well as a corporate sponsorship with American Airlines, the newly named official airlines of Lupus LA. Lupus LA’s latest campaign, “Your Story, Our Fight” was unveiled at the gala with Salkowitz noting, “We are sharing lupus stories. Sharing these stories is the foundation of the brand new awareness campaign that we’re launching right here right now. Thanks to the generous support from our partners as GSK we were able to develop this campaign in order to raise the level of conversation about lupus both locally and across the country. Thanks to our successful ambassador program, Lupus LA is already the preeminent organization for lupus awareness but this campaign will take us to the next level.”
“Raising lupus awareness is critical to all aspects of our mission. Awareness creates more dollars for groundbreaking research, more interest to make rheumatology a career purpose, more patient interaction and involvement and a greater understanding of the struggles that lupus patients face.”
We had the chance to catch up with the producers and stars of film and TV shows and ask them why it means so much to them to support Lupus LA.
Regina Lines Photo by Tiffany Rose/Getty Images for Lupus LA)
Regina Lines (Producer, D-Railed)
What brought you out here to support Lupus LA?
“Some friends of mine have lupus. I’m hoping this opens up other people to delve more into what lupus is about. Just because we don’t have it or perhaps they don’t know anyone in their immediate circle, there are people struggling with it daily.”
What are some of the misconceptions you feel that people have about lupus?
“I think that because some people look fine if you look at them, you don’t realize what they are going through with lupus. Of course there are various degrees but some people look ok. My friend who has been struggling with lupus for decades, she’s on daily dialysis. Yet, she’s an amazing actress and dancer, and she’s on TV. You don’t realize she has lupus, and then she goes home and she has dialysis.
Niles Fitch attends the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel in Beverly Hills, California.
Niles Fitch (Teenage Randall Pearson, This Is Us)
I love how even though you must have been devastated by the loss of your father from lupus, you’ve not only moved forward in your career, but you’re helping other people who are going through pretty much the same journey that you and your family went through.
“That’s my viewpoint. Death cannot be a burden. You have to use it and make it something that pushes you and makes you want to go even harder. I feel that’s why I’m successful now because I didn’t let it turn into a burden. I use it as a trampoline and that made me want to jump to even higher success to make my dad proud.”
Switching gears here, were you just stunned by the success of This Is Us?
“I really was especially because we were brought in right in the middle of the first season so we saw like, two, three episodes, and we saw that people liked it but we had no idea that it would turn into such a big phenomenon and not only that, we didn’t know that we would be included in so much because we just came on the show as a guest star. So we didn’t know that we would turn into recurring and now series regulars.”
Finally, I have to ask. I love your suit! Tell me a little about your suit.
“So I got this from Indochino. That’s a place where you can go and customize your suits. It was really just a creation of my mom and I .The color for lupus is purple, and there’s an African terminology named Oya which I just found out that means life and death, that’s purple and I didn’t even know that. This suit has a lot of meanings and purple to me is royalty and that was my dad’s favorite color.”
That is so lovely. It’s like the whole evening is a beautiful tribute to your dad.
Yes. To me it is.
Eris Baker attends the Lupus LA 2019 Orange Ball.
Eris Baker (Tess Pearson, This Is Us)
Is there anyone in your life who inspired you to come out and support Lupus LA?
“Yes. I’m here with my amazing aunt. She actually is a lupus warrior, she has lupus right now. So, it’s so important for me to come to an event like this. She inspires me so much with how she’s fighting for her life everyday and at the same time, she’s always doing what’s right for her family. She works out every day, she eats well. She’s not letting lupus define her and that inspires me so much so being here with her means everything.”
Taylor Spreitler attends the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel on May 4, 2019 in Beverly Hills, California.
Taylor Spreitler (Kendra Gable, Kevin Can Wait, Mia McCormick, Days Of Our Lives)
Why did you decide to come out here to support Lupus LA?
“Well, I am an ambassador for Lupus LA and I’ve been involved for a while. I got involved through Melissa Joan Hart who is also an ambassador. It’s really important to me knowing the people involved and the work that they’re trying to do, and so I’m happy to come out and support them.”
Has there been someone in your life who has struggled with lupus?
“I had a friend growing up whose mom had it. At the time, I didn’t understand what lupus was. I really had no idea. And, getting involved with this organization is kind of how I learned what it was. And just hearing people’s stories and meeting so many women who are affected by it, it really just kind of hit home for me.”
Ok, switching to a totally different subject that I know people want to know about…you’ve been on one of the most popular soaps of all times, Days Of Our Lives. How is working on a soap different from working on network TV?
“Soaps are crazy! It’s like actor’s boot camp. Everything’s so fast paced. You get one take in everything. In a sitcom we have an audience and we have a lot more time. We film an episode a week while soap operas film an episode a day basically. So it’s crazy. It’s a lot of fun and everything else feels like a walk in the park afterwards.”
Krista Marie Yu attends the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel.
Krista Marie Yu (Molly, Dr. Ken, Jen, Last Man Standing)
Why did you select Lupus LA as a charity to support?
“Lupus LA is actually one of my favorite organizations because lupus affects a lot of people in many different ways and it’s something that somebody has to deal with for their entire life. So, often I feel like it’s hard for people to feel like it’s ok to reach out and ask for help because it’s something that’s forever. And so it’s important for them to know that they’re supported and it’s ok to ask and it’s ok to express if they’re not feeling well. Because it’s nothing to be ashamed of, nothing to hide even though it might be an invisible illness. It’s not a weakness, not a burden and the right people will always be there for you.”
Scott Michael Campbell attends the Lupus LA 2019 Orange Ball at the Beverly Wilshire Hotel on May 4, 2019 in Beverly Hills, California.
Scott Michael Campbell (Brad, Shameless)
Why was it so important for you to come out tonight to the Lupus LA Orange Ball?
“I had a very very dear friend who passed away from lupus. Just 21 years old, in the mid 90’s and she had the most amazing healthcare. To see what she went through was heartbreaking, the disease went through her entire body. Just to see what Lupus LA is doing on the ground. They’re really really making a difference. Tonight we’re raising money for a fellowhship. Grab a young doctor and basically sponsor the next year of their practice. Lupus is one of those things that so many people don’t know anything about. And especially people who don’t have access to the great healthcare and physicians, it gets misdiagnosed and looked over.”
And that’s a huge issue in our country is healthcare.
“Yeah. And I could go off on that forever. Even when Nancy Utley got up and talked about her experience last year, she mentioned that she has access to some of the best healthcare in Los Angeles and she has a career where she gets to go to see doctors and a lot of people don’t have that.”
Since 2000, Lupus LA has raised more than $13,000,000 in their efforts to find a cure as well as provide support for those struggling with the disease. For more information on Lupus LA, please visit their site.
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Cover photo of Adam Selkowitz, Hannah Zeile, Niles Fitch, Eris Baker and all other photography courtesy of Tiffany Rose/Getty Images for Lupus LA.
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