Nancy Davis’ Race to Erase Multiple Sclerosis

Episode Transcript

Dr. Correa:
Welcome back to the Brain and Life podcast. Audrey, how's your week going?

Dr. Nath:
Wonderful. Great to hear from you here on the Brain and Life podcast with the American Academy of Neurology. Who did you talk to this week?

Dr. Correa:
Oh, I'm really excited to share our episode. I talked to a total lady boss, but I want to know, just before we start, what were you and your husband dealing with when you had your first child?

Dr. Nath:
I was 33 years old. I had my first baby. Oh, my goodness. We were living in Boston, so we were navigating pushing a stroller in the snow, a mile away to his daycare. All kinds of things. Learning how to make baby food, doing multiple loads of laundry a day. There's just so many little things. It all seem like old hat now, that were just kind of overwhelming at times in that first year.

Dr. Correa:
Beyond all the logistical challenges for young families starting off and figuring it out, and I'm sure you'll be milking that I pushed the stroller for a mile in the snow for a while.

Dr. Nath:
Hey, it happened. Yes. Ezra will hear about this for the rest of his life, yes.

Dr. Correa:
Well, my guest, Nancy Davis, also at age 33, had 3 young kids, and at that time she had an unexplained fall while skiing. And then, on top of everything else she was dealing with her young kids, she got a new diagnosis of multiple sclerosis.

Dr. Nath:
Oh, my goodness on top of all of that.

Dr. Correa:
Yeah. She shares with us that early process of getting the diagnosis, picking treatment, getting her condition under control. And beyond that, she took the example from her own family, having had experience working in philanthropy and fundraising for nonprofits, and took her experience with MS, and that galvanized her to start an organization called Race to Erase MS, and it's a nonprofit.

Dr. Nath:
Oh, cool. I've heard of that.

Dr. Correa:
Yeah.

Dr. Nath:
Nice.

Dr. Correa:
Yeah, so they have established work towards research and funding, to provide collaborations and expand treatments to find a cure for MS. So three kids wasn't enough of a challenge.

Dr. Nath:
Incredible.

Dr. Correa:
She grew her family to five, and is helping us work towards better research and finding cures for MS. It's amazing.

Dr. Nath:
This is amazing. I've got to hear this.

Dr. Correa:
Well, I hope you and our listeners enjoy this episode. Welcome back to the Brain and Life podcast. Today, I'm joined by Nancy Davis. She's the president and founder of Race to Erase MS, a nonprofit dedicated to funding research to expand treatment options and ultimately cure multiple sclerosis. The initiatives and efforts funded by this nonprofit was even part of the development of the first B-cell therapy for MS, called Ocrelizumab, that was approved in 2017.

Dr. Correa:
Nancy founded the Race to Erase MS in 1993 after being diagnosed herself with multiple sclerosis, and in an effort to devote her time and resources to finding a cure for everyone else living with MS. Over the years, they've raised over $60 million for research and treatments for MS, but most importantly, she does all this as a full-time mother with five children. Nancy, you are truly an example of women running the world. Thank you for taking the time to join us on the Brain and Life podcast.

Nancy Davis:
Thank you so much for having me.

Dr. Correa:
Before MS even entered your life, tell us a little bit, something about you and your family.

Nancy Davis:
I grew up in Denver, Colorado. I was one of five kids, middle child of five, not a bad place to be. Loved to ski, loved to be outdoors. Had a lot of plans for my life, a lot of things I wanted to do. I never dreamed that I too would end up having five children. I thought my mom was a superhero to do that, but I had three kids, and I was fortunate enough to have parents who were very philanthropic, and that was a part of my household. My little sister was diagnosed with juvenile diabetes at seven years old and we started something called the Carousel Ball or the Carousel of Hope, and I worked on that with her from day one. And just thought that everybody should work on charity. I thought that's what people did.

Nancy Davis:
And when I was finally diagnosed with MS at age 33, I had really greater knowledge of how to seek out, finding things. I was told when I was first diagnosed with MS, that I would never walk again. Life as I knew it was over and I needed to figure out how to get the art of a second opinion. There was no drugs on the market. There was no cures. There was very little hope. So, I'm grateful for my parents for inspiring me to understand that if you don't get the answers you want to questions, that you have to look harder and further and create some of your own answers.

Dr. Correa:
I'm wondering for you, at the start, what were the initial symptoms that led you to see the doctor?

Nancy Davis:
At first, I had a ski accident. And about three weeks later, I woke up and started losing the feeling, at first in my three fingertips on one hand, then three days later, my whole hand. Then three days later, the three fingertips on my left hand. Then three days later, the whole hand. Then my stomach went numb. Then my eyesight started going. And every three days there's a new thing so, I called my orthopedic doctor and I said, "I think this knee brace or my physical therapy is doing something to all the feeling." And he goes, "No, I really want you to go have an MRI." I'm like, "Why would I have an MRI?" He goes, "You just need to have an MRI." And I guess secretly, he felt that maybe I did have MS.

Nancy Davis:
And diagnosed pretty quickly with MS. Most people, especially in that day and age, it took a lot longer. This was 30 years ago. And at the time there was no known cause, no cure, no drugs on the market, and no hope. The doctor told me I should "Just go home and go to bed." And I was "Very lucky that I could probably operate the remote control in my TV set." And I said, "There must be some treatment, even an antibiotic or some medication or something." And he just gave me this very disappointed, vacant look that just led me to believe that I would never walk again. And that was how it was defined in his medical books at that time.

Nancy Davis:
I went and got second opinions. So lucky that I did, and along the way, found that the best and the brightest doctors in our country were all doing identical research as each other but were convinced that they were the only one doing that particular study. But they were doing the same thing at Harvard, at Yale, the Cleveland Clinic, at USC, UC San Francisco, Johns Hopkins they were doing the same thing. And I thought, "Gosh if I could put the best and the brightest people to work as a team, to never duplicate research, but to constantly communicate every month, we will find a cure quicker." So long story short because it was very hard to put together, we put together seven of arguably the best doctors into something called the Center Without Walls, which was a consortium for all these doctors to communicate. And we would not fund or bring any doctors in there who were not willing to communicate. We thought if we could have each doctor really benefit from each other and create a great forum where they would talk and not work separately in competition in a vacuum, we would get there quicker.

Nancy Davis:
What I've noticed over the years that I'm most happy with is so many of these people came in the early days and they were mad. They were angry. They were in a wheelchair. Their families were sad. There was just so much sadness. And so little hope. To see a lot of those same people come today and they get up, they walk, they're feisty. They're asking all the good questions. They're very proactive in their healthcare. And there's so many options for that person. I get a lot of phone calls, I would say probably four, or five a week about somebody who's newly diagnosed with MS, back in that day, there was very little you could tell them I had a lot of hope, but we didn't have actual medications. And today, I mean, they're advertised on TV all day. MS went from a very unpopular disease to more of a popular disease.

Nancy Davis:
And popular meaning, we have a charity event every year called the Race to Erase MS. So we raise a certain amount of money. We are funding eight different doctors around the country who are really experts in this field, but they each do a different area of MS. And there's so many different ways to look at it. We fund these studies we have a scientific advisory board who helps guide us and we vote on these studies that are submitted every year and we fund whatever the best of the best is. So what we're funding is is the very beginning stages of those. And our goal here is to win the race to erase MS. That's why we're doing what we do. But it's a long process. There's great hope that there will be a cure. A disease gets popular and that people know that they can embrace it and help people. It's amazing what exists today compared to what existed 30 years ago when we started. It's completely a miracle.

Dr. Correa:
It is amazing, the changes that have occurred over the those many years, and glad to hear and see that there's more hope. And as you started to mention years ago, before many of the modern treatments, it was just thought that this condition would progress. And for everyone who had it, they were basically on course for wheelchairs, 24-hour care, and very little independence. Having lived with it over these changes, can you speak a little bit of what MS is for you as a diagnose and as a part of your life?

Nancy Davis:
In the beginning, I wasn't doing as well. And there was no treatment I could do. And I had to really search hard to find ways to make myself better and to be able to live my life and to be a mom, which was really the most important thing to me. And I think everybody's got to find that thing that helps them. It's a miracle these drugs exist today and to tell the newly diagnosed person "Here's your options." And there's a lot of options. And sometimes it's also tricky figuring that out. I remember those so well, the desperation, when I was first diagnosed, I was scared. I was super scared. Like what's going to happen? And I had children in order to be their mom I didn't want my children having to take care of me I wanted to take care of them.

Nancy Davis:
And it's amazing today when you get those phone calls that there are these options and there's no one size fits all. There's many different options because different things work for different people depending on your type of MS and the way you progress or how old you are. There's many things that people really need to consult their doctors, but they need to do a lot of research before they go to their doctor and ask the appropriate questions, how it's going to affect their life. There's nothing worse than being a young person usually, people are diagnosed around the age of 33 when I was when your life is just starting, and you're trying to feel your way in life. You want to have your career, your family, all the normal things that you've been dreaming of your whole life. And it's really tough when you have a label of this disease called multiple sclerosis and you don't know what it's going to mean. It's scary and it's terrifying because there's many layers. I think it's brilliant that there's now a diagnosed today there's so many really good options.

Dr. Correa:
Early on when you were diagnosed, had you known anybody with multiple sclerosis? Had you had any exposure to that condition or other neurologic diagnoses in your family?

Nancy Davis:
No. I'd gone to a charity event for Marilyn Hilton at the time, heard a couple of other people had MS. And I worked on this event with a friend of mine and it was kind of a tough thing. I looked at this disease as something that obviously, I didn't want however, it looked very sad and very impossible at the time. And it felt like everybody was going to be in a wheelchair and be incapacitated.

Nancy Davis:
At the time, Annette Funicello was at this event and she had been this amazing actress and she was suffering from not being able to walk or be independent. Her MS was not doing well, and that was really tough. There was other people there as well. And it just seemed like a very sad disease. When I started going to get many second opinions, it was interesting to think that all the doctors were doing the same research, and my gosh, this is so expensive and it takes so much time to fund medical research. So I thought that if we could put all the best of the brightest to work as a real dream team together, we will get there quicker.

Dr. Correa:
You mentioned that each person living with MS at the start, they have to really end up going to a lot of resources to educate themselves about it. You, as you mentioned, started off, not really knowing very many people, having a much bleaker outlook to the condition. Over the time what resources have you found most helpful for you or what you would recommend for people learning more about multiple sclerosis?

Nancy Davis:
I wrote a book a long time ago, too. called Lean on Me. The 12 steps to take when you were or your loved one is diagnosed with any life-altering or life-threatening disease. And I think it's also a good template when you're first diagnosed with any illness. But a MS especially, you've got to ask the questions. It's nice to have an advocate there for you, your family members to go with you to doctor's appointments if you're in the hospital to ask the questions. Because it's very hard to understand it, it takes a while and it's hard for you to see how different things are going to affect your body. So it's really great to have a partner with you when you go to these appointments.

Dr. Correa:
You bring up some really important things about educating yourself. The development of medications in the US can be super complicated. And your organization has been part of funding research and early research for a lot of different medications in MS since the 1990s. Having lived with MS yourself and having been such a significant part of the community, engaging with many other people living with MS what are some other important things that you think that individuals should talk about with their doctors or their neurologists beyond just the attacks themselves? What other symptoms or aspects about the conditions should they make sure they're not leaving out?

Nancy Davis:
One of the biggest things living with MS is depression. And a lot of people don't talk about that, but it's the second leading cause of death within people who have MS. Depression comes naturally when you first get diagnosed with MS, and the medications can cause that too. And it's nothing to be ashamed about, but it's something to get help for because there are medications that exist to help you if that's what you're going through. A lot of people hide the problem of mental illness. There's nothing to be ashamed of. You need to speak up to your doctor and get the right medications that will help you combat that part of it because it's a pretty natural thing that almost everybody with MS gets depressed.

Dr. Correa:
Such an important aspect I think for many conditions, many chronic conditions, but including multiple sclerosis to really consider all the other aspects that it affects your life, including your mental health.

Nancy Davis:
Your doctor's the person that's sitting there listening and they want your whole history. And if you have other ailments that are going on with that, and just because you have MS doesn't mean you can't have diabetes and lots of other things, heart disease. You need to speak up about everything because the doctor can't really help you if you don't talk about everything, they can't read your mind. And it's important to make that list when you have a doctor's appointment coming up, that you're going to go in on and just you list all the possibilities. And sometimes that little thing that you're afraid to mention is probably the most important thing. So don't be afraid to speak up and ask questions.

Dr. Correa:
We're so glad that there are so many more treatments that the scope and the direction of management of MS is now much more hopeful and positive. But I'm interested since you straddled that line as both a person living with MS and a leader in an organization supporting research, what are you excited about on the horizon for MS?

Nancy Davis:
I am so excited by the idea that the reality of a cure actually does exist. It's not a pipe dream. There's so many incredible things happening and I'm a very big optimist, and I really feel that we will find a cure for MS. And then someone says, "Well, how do you define a cure?" Because some people think we already have a cure by having some of these medicines that keep their attacks completely at bay. It's a big question, but my excitement every year grows as we have our events. This year, we're going to have our 30th Race to Erase MS coming up, which is a big milestone. And I believe more medications will get FDA approval before that, which is exciting. But with every new drug and every new treatment, other people's lives are being saved. And to just watch that, to see this evolve is amazing. It just releases every possible excitement endorphin you could have. And I'm really looking forward to finding a cure.

Dr. Correa:
And we're all looking forward to that science and the updates that come from both your organization and the many groups that are leading that research in treatments for multiple sclerosis. We hope to hear more news about a cure and many new treatment options that will help each person pick what's best for them. Thank you so much, Nancy, for joining us here on the Brain and Life podcast.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Dr. Correa:
Welcome back to the Brain and Life podcast. Today I'm joined by a world-renowned expert on MS or multiple sclerosis, the Chair of Yale Department of Neurology. And one of the researchers who demonstrated that MS and other neuro autoimmune disorders can start in the blood and not just the brain, Dr. David Hafler. His lab at Yale is on the cutting edge of MS research while also running a clinic that helps people who live with MS live better with MS. David, you've been a witness and a leader in the treatment and disease modification of MS. We are so glad you're joining us here on the Brain and Life podcast. Thank you.

Dr. Hafler:
Thank you, Daniel, for having me.

Dr. Correa:
We've had a few episodes about multiple sclerosis, but for those of us who have not heard those episodes, can you briefly explain to us what is MS?

Dr. Hafler:
We now know MS is a genetically mediated autoimmune disease where the immune cells, the T cells become activated in the blood and cross from the blood into the nervous system to mediate inflammation, recognizing myelin and causing the so-called demyelinating lesions that cause MS. We know it's genetically mediated as part of the International MS Genetic Consortium. We've now identified 233 genetic variants associated risk of the disease each with a very small disease effect but together have defined pathways which define the disease.

Dr. Hafler:
The other major finding in terms of understanding MS is that the depletion of B cells are blocking T cell traffic into the brain, very major effects on stopping disease exacerbation. So we know from the use of the drug Natalizumab Tysabri which blocks the T cell entry into the brain, that you stop attacks. However, when you stop the drug within a few weeks, the disease can reoccur. Perhaps the most important discovery in the field of MS is that by depleting B cells, which are likely turning on T cells, has a major effect in stopping disease exacerbations. So it's important to say that we know that B cell depletion stops early relapse remitting MS. But what we don't know is whether it will stop long-term progression in the disease, we believe it will, but that will take decades to really learn.

Dr. Correa:
You mentioned that it's a demyelinating disease that affects the white matter. So what's the importance of the myelin and the white matter in the brain?

Dr. Hafler:
So the myelin covers the oligodendrocytes the type of cell in the brain, a glial cell coats nerves with myelin, and what myelin does, it speeds up the conduction. So nerves that are not myelinated the conduction through the nerve like through a wire is very slow, with myelin you have market increases in conductivity. So you have parts of the brain that very heavily myelinated. But I will say we often concentrate on MS being a demyelinating disease, but I'd look at it more as an inflammatory disease of the white matter. And important to note that early on in the disease so there's loss of myelin, there is also loss of the axons, which is surrounded by the myelin. It tends to be out of proportion, the loss of myelin to the loss of neurons and axons, but there still is very early on in the disease damaged to the axons. Which is why it's critical we believe to stop the disease early on and not concentrate on remyelination, which occurs naturally, but in stopping the initial immune process that leads to disability.

Dr. Correa:
Now you mentioned from some of your lab work, and as you were talking about B cells and T cells and their involvement in the immune process, are they all bad, or what do really B cells and T cells do that helps us in our body?

Dr. Hafler:
Well, it's all part of the immune system. It's a wonderful question. So B cells make antibody, which are secreted products made by the cells, which recognize viruses, bacteria. T cells direct the B cells. So if you get rid of T cells, you have a very poor B cell response. So the two work together very closely mediating immune responses. So the T cells and B cells together are important for fighting off microbes, foreign microbes. And the example, very timely example is as far as CoV-2 virus or COVID 19, which I'm sure everyone has now heard of. You need both an antibody response and a T cell response to fight off the virus. So early on, with viral infection, you have antibodies being made, which help stop the virus. But more importantly are the long-term T cell responses, which recognize cells infected with the virus and then can destroy those cells. So the two work together.

Dr. Hafler:
It's important to note that B cells, beside making antibodies, are very involved in turning on T cells. That is the B cells are involved in presenting etched into T cell to tell them what to react with. And the very hot topic which has been around the sort of a smoldering gun for 30, 40 years has been the Epstein-Barr Virus. Which has recently reemerged with a beautiful paper by my friend and colleague Alberto Escudero, who suggested that EVB infection precedes MS. The problem is we've not been able to find biologic evidence for this. But EBV infects B cells, that's the target cell for that virus so maybe that B cell depletion is eliminating viral infected cells. That's an idea, an hypothesis though there's no direct evidence for that.

Dr. Correa:
So some of the newer treatments or the treatments in now almost the last several decades have involved effects on B cells and T cells. And thankfully with the increase in treatments now there's almost a diner menu of treatments for MS. How do you walk through this with patients to find what's right for them?

Dr. Hafler:
The therapies that are most effective are therapies that block T cell traffic like natalizumab or anti-VLA-4 though, there are issues with infections that can occur like progressive multifocal leukoencephalopathy or PML. But we can monitor for that by measuring the JC virus. You're safe if you don't have evidence of a JC viral infection and B cell depleting therapies, and there are multiple ways of doing that. There are very safe therapies that can be used first line. So we basically use the B cell depleting therapies, whichever one you choose to do as a first-line therapy.

Dr. Correa:
To get back to sort of that risk-benefit discussion, especially with some of these newer immunosuppressive treatments in the shadow now of multiple endemic and pandemic infectious diseases. How do you discuss the immune suppression risks between these treatments for the patients that you help take care of?

Dr. Hafler:
So as I've been saying, if... I'm going to use the word when they become infected because the BA.5 variant is just so common now. I just do morning report and ask the residents, "How many of you have had COVID in the past few months?" And like 80% raise their hand. So this is more virulent than measles. It's incredibly infectious. So it's almost not a question of if you will get it, more a question of when you will get it. But we're finding our patients doing pretty well. Most of our patients are vaccinated and the Omicron BA.5 seems to be less toxic than some of the original viruses. So if you are immunized and on B cell depletion and on Evushell, we have not had any problems with our patients. I mean, every week we're seeing dozens of patients get infected and they seem to be doing very well. But again, most have been vaccinated, and most of our patients now are on the Evushell to be protected with antibodies.

Dr. Correa:
So are there other important considerations now in the context of COVID and possible other future pandemics for people living with MS and on these anti-CD20 cells treatments?

Dr. Hafler:
Well, we don't know where the future will take us with this. Nature is about generating diversity. We need to prepare for the next big one if there is a big one. I used to say to people, "I'm an immunologist." And people would say, "What's that?" And now they ask "What do I do?" I say, "I'm an immunologist." And they start cheering me. The world now knows what immunologists are and what we do. And half my lab does very basic immunology looking at how the immune system works, regulatory T cells, and such. So I don't know the answer to your question, Daniel we will see. It appears that individuals on B cell depletion or for that matter Gilenya also, were at an increased risk for infection, consequence of infection because of altered immune responses. But we seem to be dodging this bullet right now.

Dr. Correa:
That's great. And working with the patients and families that have helped take care of what have you learned from them about MS and living better with it?

Dr. Hafler:
I love seeing patients that moved. I was in Boston for 29 years and moved to Haven now 13 years ago. So I've been able to follow patients so I picked up some 30, 40 years ago in my twenties, late twenties, when I started my twenties now approaching 70. So these are patients I've followed forever and we've grown old together or grown younger together, watched their families grow and they watch my family grow.

Dr. Hafler:
And to me, it's about caring for the patient. One of the things I teach my fellows and resident is you don't start with asking the question "What is the chief complaint?" That comes later. The first question is, "Tell me about yourself who are you? What are your issues?" And caring for the patient showing you care to me is it allows you to build up trusting relationships that are critical. The other message I give to MS patients, which I couldn't give when I started in 1970 as a freshman in college, is "This is a highly treatable disease. You're going to be fine if we do these treatments early on, the result is spectacular that you should live a normal life. Live your life, and we will take care of you." So those are the messages I'd like to give to MS patients.

Dr. Correa:
Oh, that's excellent. Thank you so much for the work that you do and for joining us here on the Brain and Life podcast today. Dr. David Hafler, we really appreciate you taking the time.

Dr. Hafler:
Thank you, Daniel. Pleasure chatting with you.

Dr. Correa:
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Nancy Davis’ Race to Erase Multiple Sclerosis

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