New York Street at Fox Studios lit up for the Orange Ball Gala
CENTURY CITY, CA (LA ELEMENTS) 5/21/2016 – “This organization, it’s not just Lupus LA, I want it to be changed to Lupus USA,” says Kristen Johnston while accepting the Loop Award which is given by Lupus LA to an individual who makes the world a better place for people with lupus. Lupus LA held their annual gala, the Orange Ball: A Night of Superheroes, at Fox Studios on New York Street on May 7th.
The advocacy coming from this entertainment community devoted to funding treatment and finding a cure for this autoimmune disease that causes debilitating inflammation was heartfelt. Film and studio executives as well as stars from music, motion picture and television gave generous support, both financial and personal, and issued powerful statements as to why they were providing such support to Lupus LA. VIP attendees of the Lupus LA Orange ball included: Dr. Daniel J. Wallace (lupus researcher and rheumatologist in clinical practice at Cedars Sinai and founder of LupusLA), (Terrence Jenkins, ( E! News, The Perfect Match and host of the evening’s festivities), Kristen Johnston, (The Exes), Joseph Gordon Levitt, (Sin City: A Dame To Kill For, 500 Days of Summer), Michael B. Jordan, ( Fantastic Four, Fruitvale Station,) Lorenzo James Henrie, (Fear The Walking Dead), Haley Ramm, (The Originals), Peter Horton, (producer/director), Sophie Tweed Simmons, (Gene Simmons: Family Jewels) Elizabeth Hamois (CSI) and Kelly Jenrette, (Grandfathered)
Chairing the event were: Lauren Shuler Donner, (producer X- Men Apocalypse and Lupus LA Event Chair), Nancy Utley, ( Lupus LA Event Chair and President of Fox Searchlight Pictures), and Jim Gianopulos, (Lupus LA Event Chair and Chairman of Fox Studios)
Pop stars Ryan Cabrera and Howie Day provided the evening’s musical entertainment.
Actress Kristen Johnston and actor Joseph Gordon-Levitt
Introducing Johnston was her former co-star from “3rd Rock From the Sun,” Joseph Gordon Levitt who recalled Johnston’s early struggle with Lupus. “It was concerning, she didn’t know what was going on. She was of course making jokes about it, but when you see someone close to you, it doesn’t make sense. ‘Why would she be tired climbing the stairs?’ and you don’t know why. That’s scary. It doesn’t feel good. And I remember that really vividly and it was only just a few months after that she wrote an email to just the people close to her and she told us that she had been diagnosed with lupus. It’s not surprising to me knowing her as I do that she would confront this thing and get involved with Lupus LA, become an ambassador of the organization and use her talent to let people know what the disease is and I’m just really proud of her.” Addressing Johnston directly, “I love you and I’m happy to be here to honor you.”
Actress Kristen Johnston recepient of Lupus LA’s Loop Award
Johnston took the dais and delivered a speech that was in part both hilarious, (“I’m going to keep this as brief as possible just so that we can go home.”) and hard-hitting such as when recalling the struggle it took to do simple activities and the round after round of excruciating tests endured prior to being diagnosed and treated for lupus.
“I remember that day vividly that Joe was talking about on the stairs, on the landing. I was trying to catch my breath but I was like, ‘Look at that window! Is that square?’ You know, trying to distract from the fact that I couldn’t get up the next flight. I was there to shoot the show and I couldn’t shoot it and I ended up just sleeping in a hotel room for two days so that gave me a little indication something might be wrong.
“Anyway, after eighteen doctors and a wheelchair with a back brace to keep my head up, I couldn’t feed my dog, I couldn’t walk upstairs, I couldn’t stand. Two weeks at the Mayo Clinic, the worst, most agonizing tests you could ever imagine for real. I know a lot of you here know what I’m talking about; electrocution, all that good stuff, bone marrow stuff, you know fun stuff like that. Biopsies and muscular what not. And nobody told me it would be like this! Finally, a doctor, a very esteemed doctor told me that this was going to be the rest of my life. So, I was 46, in a wheelchair and I couldn’t hold my own neck up.”
“Beautiful Mindy Schultheis from “The Exes” producer of the show I was on, saved my life by saying, ‘Go to Dr. Daniel Wallace, please.’ And after all these tests, countless doctors, Mayo Clinic, everything, he said, ‘You have lupus myelitis. I can get you on your feet in two weeks,’ and he did.
It’s been a year of highs and lows but I was within two weeks walking, taking care of my dog, and washing my own hair for the first time in a long time. When you have a friend bathe you, that’s the depths, for me anyway –I’m pretty independent. So now everyone at Dr. Wallace’s office is like, ‘Can you start trashing him a little bit? We have way too many clients because of you.’
“There is nothing, nothing on earth better than a doctor who cares, nothing. I love him so much, I really do.” With perfect comedic timing Johnston added, “I know he doesn’t really care about me that much, but I do feel as though he’s my best friend.”
“All over the United States, people are constantly reaching out to me and I always send them to the website. They always get help, one on one, people contact me back. I don’t know how they do it but what you guys do is a miracle. So it’s not LupusLA.org it’s LupusUSA.org. I’m serious. I want to change it. I just want to thank you all so much for this amazing honor, I am sincere I really am.”
Dr. Paul Hackmeyer recipient of the Medical Visionary Award
Following Johnston was Dr. Paul Hackmeyer, winner of Lupus LA’s Medical Visionary Award who evoked laughter with his observation, “I’m going to have to change gears a bit from the previous recipient. I’m not sure I can match that…”
“When I arrived for my monthly infusion several months ago, Dr. Wallace pulled me aside into one of the exam rooms for privacy. My first thought was that I was in trouble and that the labs had come back abnormal with yet again something wrong. Instead, I was surprised when Dr. Wallace asked me if I would accept this honor and without thinking I blurted out, ‘Why me?’ His response was, ‘Because you have been taking such good care of my lupus patients for all these years. After the infusion, as I walked back to my office, I thought, ‘But really I’m just doing my job.’
In his acceptance speech Hackmeyer noted the fatigue and muscle weakness that he felt back in 1977 when he was studying to become a doctor. Symptoms which did not alarm him at the time as he felt they came naturally with the challenge of medical school. However as time went on, fatigue and muscle weakness gave way to more serious ailments. “After a while, other symptoms presented; migraines especially with weather changes and change of seasons, pleurisy, inflammation of the lining of the lung, blood clots, and then after several kidney biopsies, the diagnosis of lupus was made. I was placed on several medications eventually resulting in stabilizing the disease but at a cost of an extra 35 pounds, and so 20 years went by. I was pretty much stable, fluctuating from time to time, especially worse when the seasons and the weather changed. Then suddenly, gone. The lupus went away for a dozen years until fairly recently when I found that I was able to predict the weather again and found that it had returned. Thankfully, Dr. Wallace has kept me stable and functioning at a high level.”
Hackmeyer recalled a patient who after delivering a baby experienced many of the same symptoms he himself had endured. Accordingly, he referred her to Dr. Wallace who made a lupus diagnosis. The patient returned for a follow up explaining that her condition had caused her to feel misunderstood and alone and wondered how Hackmeyer knew that she had lupus.
“I told her she is not alone. I have lupus too and I have had many of the same symptoms on and off for over 30 years. Lupus flares after a delivery and that was the key for me. I am grateful to be able to care for my lupus patients. I am grateful to bring a unique perspective to caring for my patients and I am grateful for your recognition tonight. Thank you.”
Honoree Meredith Davidow Pegula
The final honoree of the night was singer and songwriter Meredith Pegula who occasionally addressed her remarks at Dr. Daniel J. Wallace who was in attendance. Here in part is Pegula’s Daniel J. Wallace Founders Award acceptance speech.
“Thank you Lupus LA. Thank you so much for this incredibly meaningful award, the Daniel J. Wallace Founders Award. I’m so thankful for all the work that you do. You do such incredible work. I owe so much of my life to you.” “I am both honored and humbled to receive this award that bears my amazing lupus doctor’s name, Dr. Wallace. Dan, I have always admired you, I am so grateful for your dedication and your relentless curiosity and determination to figure out this lupus puzzle. Your tireless search to find better treatment to make us healthier and of course ultimately, please God, to find a cure.”
“Dan, I don’t know if you recall this story but about four years ago, my mom, dad and I were having lunch with you and Dr. Weinstein at Jerry’s Deli, which of course is no longer there. I told you that I was going to stop my 90 minute monthly infusions of Benlysta which was the lupus drug that you researched and made available to lupus patients.” “I had been taking this medicine for six months and I was still having joint pain, muscle pain and fatigue and pain in my heart and my lungs. And I thought, ‘What is the point of taking this drug that has these nasty side effects that can’t even help me?’ and I lost all hope. I will never forget Dan saying to me, ‘Meredith, please just give it six more months. I promise you your life will be so different. You won’t even recognize your life,’ I will never forget that you said that, ‘You won’t recognize your life.’ And then you said to me, ‘Please trust me.’ So what do you think I did? I followed my doctor’s orders.”
“I continued going for my monthly infusions, side effects and all and about six months later, like magic, I became transformed. My days and weeks that had been filled with daily doctor appointments…it was like a job, daily doctors appointments to get relief from the fatigue and horrible pain and I thought, ‘ I could now spend time pursuing the dreams that had been on hold for nearly 20 years. Do you know what a miracle that is? I could finally participate in the world in ways I couldn’t before. Because of you, Dan and your incredible work with Lupus LA, I got my life back. Something that I never ever ever thought was possible, having been sick for most of my adult life.. Now, I have not only the determination and desire to make a difference for others in this world, but the energy to support me in reaching my goal.”
“Dan, the work that you have accomplished with Lupus LA teaches us that we must never give up hope and that there is indeed a better future for lupus patients and their families. While my life is so much better, I still struggle with certain issues related to lupus.” “The fight is not over. We must continue to support Lupus LA and allow our funds to lead to measurable change giving each and every lupus patient an opportunity to lead a full and happy life. All of us are here tonight because we’re touched in some way by this horrible disease and I believe that we are all on this path together to not only find better treatments for lupus but to find a cure. Dr. Daniel Wallace, you are my superhero. I am so grateful to you and I would like to share this special award with you. I want to thank you all so much for your hearts and thank you for being here. I hope you have an amazing night. Thank you Lupus LA.”
Prior to the awards presentation we were on the orange carpet to ask celebrity guests why they came out to support Lupus LA. They all gave a variety of compelling reasons. Here is what they had to say:
Hayley Ramm
My mother, she has lupus and she’s had it for a while. I think lupus is something that needs a lot of awareness because my mom for example had it for so long and they couldn’t find what was wrong until pretty recently. It’s something a lot of people don’t know about and I think the more we talk about it and raise awareness and money the more chance for a cure we have.
Haley Ramm
Ryan Cabrera
I’m about to go on tour for a long time so if there’s any events like this that I can support I want to get that done before I leave. I will be touring the US. It’ll be me, 98 Degrees and O Town. We’re doing kind of like a fun throwback tour of some early 2000’s music and then I’m going to premier some new stuff.
LOS ANGELES, CA – MAY 07: Singer Ryan Cabrera
Sophie Tweed Simmons
“I think it’s important for celebrities to support any disease that affects this many people. It’s a disease that not a lot of people talk about because I don’t think they really know what it is. It’s an inflammatory disease, it affects your immune system and I’m happy to be here to give my support.”
Sophie Tweed Simmons
Elizabeth Hamois
It’s a disease that no one else can catch except the people who have it. I think it needs more attention because people can look and seem perfectly fine and still be suffering. People learn how to put on a very good face when they’re suffering with this disease but there’s a lot going on with them. I think it’s important to raise more money and find a cure. Until that time, help with support, and support systems, have people feel comfortable to come out and talk about lupus and not be scared, help them be open about having a disease that doesn’t affect their ability to work, it’s just something they have to struggle with.
Elizabeth Harnois
(photo: LA ELEMENTS)
Lorenzo James Henrie
It’s a great cause and a great event. Whenever I get asked to do these types of things, I’m always a fan to come help people and support good causes. People who are suffering… anything I can do to support and make them smile. I know a few people with lupus so I’m glad I can support the cause.
Lorenzo Henrie
How exactly does Lupus LA carry out its goal of caring for those afflicted with lupus? In his opening address to the gala attendees, Chairman of the Board of Lupus LA, Adam Selkowitz, clarified the mission of the organization and revealed the role that Lupus LA plays in the lives of lupus patients.
“There are over 60,000 lupus patients in southern California alone. It’s our mission to support them and their families in so many ways. They count on us to fund groundbreaking research, to provide the latest information on lupus treatments and to help them when they can’t afford their medication or when they just need other lupus patients to talk to. We hold hands we provide guidance, support and hope to those patients and to millions of others around the world. Our reach goes far beyond this street and we thank you for allowing us to carry on our mission.”
From left to right: Adam Selkowitz, Terrence Jenkins, Michael B. Jordan and William Morris Endeavor Agent Phi Sun (Photo courtesy of Michelle Marie PR)
The Lupus LA Orange Ball was sponsored by 20th Century Fox, WE tv, LaCroix Sparkling Water, Susie Cakes, Essentia, Tito’s Handmade Vodka, Carlsberg Beer, Wedbush Securities, California Fruite Wine, and Fenix Cosmetics.
To find out more about Lupus LA please visit their website.
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All photos including cover photo of Joseph Gordon Levitt, Kristen Johnston and Terrence Jenkins by Tiffany Rose/Getty Images unless otherwise noted
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