David Osmond battles MS with harmony and hope

David Osmond’s no stranger to the stage — a musician, on Broadway and as part of The Osmonds 2nd Generation singing group alongside his seven brothers, all sons of Alan Osmond, one of the original Osmond Brothers.

But Osmond shares something beside musical talent and a love of performing with his famous father. When he was 26, he was diagnosed with multiple sclerosis, the disease that eventually curtailed his dad’s performing career.

The literal translation of multiple sclerosis is “many scars.” It’s an unpredictable autoimmune disease of the central nervous system — including the brain, spinal cord and optic nerves — that can interfere with how information passes between the brain and the rest of the body, according to the National Multiple Sclerosis Society. The estimate is at least 1 million people in the U.S. now share the diagnosis.

The immune system attacks myelin, the protective protein-and-fatty sheath around nerve fibers, creating scar tissue or “lesions” that can’t carry electrical impulses normally. Traditionally, it’s seen as having two forms: The relapsing-remitting version that David Osmond has, which flares and ebbs, and the progressive form that Alan Osmond, 76, has lived with for many years.

Usually referred to by the shorthand name MS, the disease shows up differently in people, but often includes fatigue, problems with memory and varying degrees of mobility impairment. For a while, David Osmond used a wheelchair, though he’s back on his feet again.

Amid his busy performing schedule, Osmond, 46, now lends his very recognizable name to the Race to Erase MS, a massive fundraising effort that stretches back to the dark ages of the disease and which has contributed to a majority of the big and fairly recent breakthroughs leading to treatments to ease the pain and misery of those who have MS. More progress has been made in the past five years of the disease’s history than in the previous 100, he said.

The making of the Race to Erase MS

When Nancy Davis was 33 — just over half her lifetime ago — she was diagnosed with MS. Doctors described the sad reality of the disease at the time: no cure, no FDA-approved treatment, no idea why it happens or good suggestions about how to manage it. She was told that even her hands would weaken to the point that “you’ll be lucky if you can hold a TV remote.” The field of medicine had nothing to offer her.

Figuring she was too young to give up and not one to sit around, Davis decided to get a second opinion and also see what MS research was being done. To her dismay, she found that “all the best doctors in our country were doing identical research” and none of them realized it as they plugged away in their research silos.

She didn’t find anyone to tell her she didn’t have MS, but Davis told Deseret News that amid her discouragement and fear over the diagnosis, she experienced a “lightbulb moment.”

“What would happen if I could get the best and the brightest doctors and researchers to work together as a team with the idea to never duplicate research but to constantly communicate with each other,” Davis said.

That was the birth of the Race to Erase MS, launched in Aspen, Colorado, as a ski race fundraiser that over time has evolved into a gala in Los Angeles, where she now lives, featuring celebrities, brilliant researchers, families with a tie to MS, well-wishers and philanthropists.

David Osmond is on the national board of directors. Other public figures with MS including Christina Applegate, Selma Blair, Jamie-Lynn Sigler, Jack Osbourne and Montel Williams are among those who have MS and are using their platforms to educate others.

Meanwhile, the Race to Erase MS has become a force that is changing lives in real time. Over the years, Davis’ brainchild has raised nearly $60 million to fund research.

David Osmond’s denial

On Christmas Eve 2005, David Osmond got his first hint of MS — pain that hit him like a fire. He was ready to relax after a show, but when he took his shoes off, he told his then-girlfriend, “Valerie, my feet feel like they’re being actually crushed by a steamroller, like I’m being run over. It’s this burning crushing pain I’ve never experienced and it started in my toes.”

Despite all the medical advancements in recent years, Osmond told Deseret News that sensation remains.

Although his dad has had MS as long as he can remember, Osmond said he didn’t understand the mechanics and “it didn’t even cross my mind because my symptoms were so vastly different than anything he had experienced.”

The younger Osmond’s version would prove to be much more aggressive; within “a matter of weeks,” he said he was worse off than his dad had been in decades with MS.

Osmond lost the use of his legs, so he needed a wheelchair. The diagnosis came from a doctor who looked at all of the scans Osmond had undergone and told him, “Son, you’ve been through the war. This looks like MS for sure.”

And Osmond responded, “No. It’s not.”

Will there be a cure for MS?

The fundraising is very important, but the heart of Davis’ work was creation of the Center Without Walls. She convinced eight of “arguably the best doctors in our country to work together, which was a magical thing to make happen at the time.”

The center — with research funding from the Race to Erase — has played a role in 18 of the 25 MS treatments that now have Food and Drug Administration approval, with more in the pipeline, she said.

“We do the pilot study for them in the very beginning, we come up with the concept, the idea and the doctors and we fund it in the beginning, and then they turn into FDA-approved drugs, which is really exciting,” Davis said. “For someone being diagnosed today, it’s such a different thing. There’s so much hope and a lot of people will be independent their whole life as opposed to being in a wheelchair, not having their independence.”

The Center Without Walls operates on simple but unusual rules. For one thing, the funds raised are only used on new research and innovation. If it’s been done before, they’re not putting money into it again, which keeps new ideas flourishing.

The center includes physicians and scientists from Cedars-Sinai Medical Center, Harvard University, Johns Hopkins University, Oregon Health & Science University, University of California Los Angeles, University of California San Francisco, University of Southern California and Yale University.

Those receiving the money have to report what they’re finding every month and share data back and forth with each other. Anyone’s research — whether it succeeds or fails — is everyone’s stepping stone. They meet in person a couple of times a year and “have these wonderful forums and they report all their studies that they’re doing, everything good and bad,” Davis said. “Not every study’s going to end up with a positive result, but the bad is just as important as the good because you have to communicate on what’s happening. And you have a much better shot of finding a cure, so that’s what we do by putting the best and the brightest together. It’s so key to what we do.”

One of the in-person gatherings happens alongside the gala; the 33rd annual event is June 5. The day of, the researchers meet and discuss their individual efforts. The day after the gala, they are part of a daylong symposium, where they share findings with each other and with the families where someone has MS. Families that can’t come can attend the symposium virtually. Information is available at erasems.org.

Will MS be cured? “We know it will happen,” Davis said. “We’re working really hard and we keep coming up with brilliant things every year that are changing a lot of lives. We wish we could do it at a faster pace, obviously,” since MS is “miserable, a nightmare.”

David Osmond’s battle

The Osmonds all likely know the story David Osmond said is part of family history. When Alan Osmond was diagnosed in his late 30s, he was given an aspirin and told, “Come back in six months. Maybe we’ll have something for you then.” They’ve also heard that years ago his friend Annette Funicello, a popular Mouseketeer and actress who had MS, told Alan Osmond, “It’s not the disease that gets you down, it’s the lack of hope.”

Fortunately, he said, his dad is “a larger-than-life, uber-optimistic character” who decided, “I may have MS, but MS does not have me.”

The younger Osmond decided that was a good way to approach it. And he found that optimism was handy when “I started tripping and falling and ultimately not being able to do anything for myself and I had to drag myself across the floor just to get to a restroom facility.”

Osmond said his “denial was aggressive at the beginning.” Now he wants to know everything: How fast it’s moving, what might happen next and what he can do about it.

He’s been through stages, not all consecutive, of feeling hope and then feeling almost like multiple sclerosis mocks him, Osmond said. Although he has been up and down, he is especially grateful for a mostly hope-filled disposition that’s similar to Alan Osmond’s.

Osmond changed what he could, starting with diet, cleansing his body and giving it every chance to grow strong and heal. He’s been as aggressive as the disease as he fights it and has left the wheelchair behind, though he kept the electric scooter and cane for moments he might need them.

“I’m in massive pain every second of the day, but my hands are moving again. My toes move again. I’m not able to quite run, I can’t quite jump and I hide it pretty darn good, but I’m back on stage. I drove a car today.”

Life, he said, is full of “little things that are so miraculous in my life.”

He proposed to that girlfriend, Valerie, from his wheelchair and has been walking without assistance since their wedding day eight months later.

He credits both lifestyle changes and modern medicine and said he tries to eat “as healthy and raw and pure” as he can.

As for the disease, it has proven to be a terrible blessing. “Crazy as it sounds, it’s been one of the best things that’s happened to me.” He said he appreciates everything more, including the ability to genuinely see others.

“When my toes moved for the first time again when I wanted them to, oh I wish I could gift that, bottle it up and just give it to everybody to say ‘Look what you have. Don’t take it for granted,’” Osmond said.

“Though the cards I’ve been dealt are not great, I also recognize I can see what everyone else is holding and I don’t want those cards. I’m going to stick with this. We’ve all got pain, we all have challenges and you start to see that vividly because I’m in that space of pain every second, where every step I take is a miracle.”

Doctors have told him optimism is both a gift and a necessity with MS, making a clinical difference. One told him, “When I diagnose someone, they have one of two ways they’re going to go. If there is a negative disposition, a negative outlook where everything is terrible, it goes that way. If you have that positive outlook, being not bitter but better, we see that you do better.”

He adds it’s easier to be positive because he has a wife he adores and two girls and a boy he would do anything for.

“MS,” he added, only half joking, ”is a terrible way to meet great people.”

Effective drugs for treating MS

Two drugs in particular have been what Davis calls a “game changer:” Ocrevus and Kesimpta. “They’re basically the same drug packaged rather differently. Kesimpta, you give yourself a shot once a month. The other you have an infusion twice a year. They do the same thing: They kill your B cells.”

When B cell levels are high, it sparks a reaction where T cells attack each other. “That’s your MS,” she said.

Davis said the need for multiple treatment options is important because people respond differently or can’t take certain medications.

Dr. David Hafler of Yale University is a neuroimmunologist and the Neurology Department chair. Davis describes him as “a very important part of our Center Without Walls.”

Hafler worries that progress in many diseases, not just MS, will slow because so much of the federal funding for disease research has been cut. Not everyone has a Nancy Davis behind them and even great private funding can’t do it all. He hopes that promoting “big wins” will turn research funding around.

When it comes to wins, he thinks MS has had a doozy.

Hafler decided to study MS when he was 17 and has been at it for more than half a century, starting as a freshman at Emory College. He’s 74 now. In that time, Hafler said researchers have gone from not knowing what causes MS and having no treatment to being pretty sure they understand its roots. He’s among those who believe getting the Epstein-Barr virus kicks off the process that will become MS in some people, based on what he calls an “increasingly refined and probably correct working model.”

While much of the world divides MS into a relapsing-remitting form David Osmond has and the progressive form that beset Alan Osmond, Hafler prefers to divide it into two different disease phases: the autoimmune phase and the neurodegenerative phase.

The doozy? “We know how to cure the autoimmune phase,” he said, but it has to be done early. He admits that “the word cure is a dangerous word because it’s never 100%, there’s always variability, but we have treatments that are so effective that if a patient doesn’t respond, we start looking for other diseases,” Hafler told Deseret News. “They’re 98% effective in very early disease.”

But MS can change, evolving from an inflammatory autoimmune disease to a neurodegenerative form that’s a lot like Alzheimer’s or Parkinson’s disease. Once it becomes neurodegenerative, it’s very hard to treat, he said.

“We can’t take someone in a wheelchair and cure them, but if we treat someone very early, we can stop the disease.”

He and other researchers have a new paper under review that suggests Epstein-Barr virus, which is better known for causing mononucleosis, is the root cause. If one is infected as a child, it’s not a risk factor for MS, he said, but as an adolescent, “it’s a major risk factor.” Some of the research funding came from Race to Erase MS.

Hafler reports that 100% of MS patients have been infected with Epstein-Barr virus, compared with about 90% of the general population.

He cited research by his friend and colleague at Harvard, Alberto Ascherio, using serial blood samples from 4 million military recruits that showed MS is preceded an average of roughly seven years by an Epstein-Barr infection. Now the theory is the virus infects B cells, turning them into something that “juices up” the immune system in such a way that someone who is genetically susceptible will have T cells attack the brain.

MS is a complex genetic disease, he said, not exactly hereditary, but with a genetic susceptibility to autoimmune diseases. Research has identified about 280 genetic variants associated with risks that affect the immune system. If you don’t have those genes, getting MS is highly unlikely. Using the UK Biobank data, researchers saw that some individuals can’t clear the virus and that genes associated with that are MS genes.

Singing a new tune

David Osmond has done a lot of thinking about what the future holds. And he’s decided that if you ask “Why me?” for the bad things that happen, you have to turn it around and ask that for the good things, too.

“I’ve learned that I’m not allowed to ask it any more unless I make sure that I ask the exact same question always for every single moment of happiness and joy, great or small, whatever it is that comes into my life.”