In our fifth episode we move the lens beyond treatment and focus on research.
We discuss the challenges of the research in neuroscience and how we can make the case for the value of innovation in brain research? We’ll also look at the importance of prevention and ask is this a watershed moment for research?
We’ll also hear directly a person living with EMEA as well as message on treatment from the neurology community.
http://oneneurology.net/
In our fifth episode we move the lens beyond treatment and focus on research.
We discuss the challenges of the research in neuroscience and how we can make the case for the value of innovation in brain research? We’ll also look at the importance of prevention and ask is this a watershed moment for research?
We’ll also hear directly a person living with EMEA as well as message on treatment from the neurology community.
http://oneneurology.net/
Welcome to the One Voice for Neurology Podcast, a series of seven podcasts exploring why it's time to make neurology a priority, how that can be achieved with a global and a uniform response and what that could mean for the future of neurology and those living with a neurological disorder. I'm Sam Pauly, and you're listening to episode five entitled the endless R and D dilemma.
Sam Pauly:Thank you for joining us on this special series of podcasts in which we're exploring the new OneNeurology Initiative across seven daily episodes. Yesterday, we focused on treatment and innovation. And today this episode is all about research. We have a fantastic lineup of guests today. Plus we'll be hearing from global neurological organizations on our one voice for neurology podcast answerphone. Before we meet our guests, let me just remind you that we would love you to join the discussion with us on Twitter. So you'll find us at, at one neurology_ and we're using the hashtag#oneneurology. Well here to join me to talk in more depth about the challenges and opportunities faced in research. I'm delighted to welcome Monica Di Luca, President of the European Brain Council, the EBC, Ja ne Ransom, Executive Director of the American Brain Foundation and Dr. Pao lo Fo ntoura Global Head of Neuroscience at Roche, a very warm welcome to you all. Let's dive straight into our first short discussion about where we are and what's next. First of all, Monica, is this exciting times in your view?
Monica di Luca:It is absolutely exciting times. We have been investing a lot on trying to understand all the possible mechanism in the brain of a patient, which are driving the disease, right? And now with all this knowledge in our hands with a large, extensive set of data that are acquired not only on basic fundamental laboratories of research, but also clinical research. Now we can merge these experiences and translate a nd become more effective and have an impact on the life of those who are living with t he disease. So we have our competences, we have data, we still need intensive research, but with the translational view.
Sam Pauly:Paulo, would you agree with that?
Paulo Fontoura:Yes. And I totally agree with Monica and I'm an optimist as well. Neuroscience is generally an area, uh, which is considered difficult for research into developing medicines. But I actually think that we're at an inflection point because there's so much progress in understanding of basic biology and research and the mechanisms for brain diseases. But we are also seeing at the same time, big advances in the technology, meaning that now we have the tools, the ability to correct those problems in the brain biology. If you want, if you think about technologies like gene therapy or gene editing, or, you know, antisense. So we're getting better at better at targeting those mechanisms. And therefore I'm actually really hopeful that we'll start to see big breakthroughs and we are already seeing big breakthroughs in new therapeutics.
Sam Pauly:Jane, the American Brain Foundation is a proponent of the philosophy of cure one, cure many. Is this an exciting time from that perspective?
Jane Ransom:Extremely, a big breakthrough that we see that's related to the genetic research that Monica and Paulo are talking about is that we have found a cure for one brain disease, and that's spinal muscular atrophy. And that's a disease that kills children by the time they're two years old, but now with a genetic therapy, children are walking, growing up, riding bicycles, running across their front yards. And now that therapy is being experimented with in Duchenne muscular dystrophy and there is progress there. So that's what we mean by cure one cure many. When we can make a breakthrough or a cure in one brain disease, we're going to be able to make breakthroughs in others.
Monice di Luca :I think it's very important what has been said about technologies. Now we really have all possible tools to be of impact on many, many different diseases of the brain. And this is our major advancement in the last, let's say 10 years or so. But we also have, based on new discoveries a number of simple drugs that change the life of people. If we think about the oral treatment for multiple sclerosis it' s really a changing life. So major advancement has been done. Sometimes they are not so visible, but we need to be vocal. Major advancement based on research has been done all together, private and public sector.
Sam Pauly:Paulo, lots of breakthroughs, but where are the research gaps still? I mean, are there any?
Paulo Fontoura:Yes. And there are certainly many challenges. I think one of them is that for more complex brain disorders like Alzheimer's or Parkinson's et cetera, we have made advances, but there's still a lot more to do on many fronts. One is understanding what causes the disease. There needs to be better progress in terms of diagnosis. One of the themes that keeps recurring is the value of early intervention and treatment to prevent the loss of brain cells rather than trying to follow after. And I'd say probably the final one is that for several of these more complex disorders, actually our ability to really understand the impact on daily life. So what symptoms patients have, how that affects their day-to-day lives, what's the impact on their families, on society is still very, u h, y ou k now, imperfect. So ability to measure outcomes is very important as well. Again, lots of really exciting changes there. For example, digital technology and wearable technology to measure symptoms more close to the patient's d ay-to-day environment. And I think there's a lot of breakthroughs that could come from there as well.
Sam Pauly:What would you say is the next direction Jane? What would that be for you? Do you think?
Jane Ransom:Well, I think in terms of gaps and directions we can take around gaps is trying to find common mechanisms between diseases and trying to focus on some of those. So for example, we're going to be funding a major piece of research to find a biomarker for Lewy body dementia. And what we're finding is the people that are working on Parkinson's and the organizations and people that are working on Alzheimer's disease are extremely interested in actually giving us funding for this research because they were in their silos, working on their specific diseases, but they understand that finding a biomarker for Lewy body dementia is going to be a big deal for them because Lewy bodies play a role in those diseases too.
Sam Pauly:The OneNeurology initiative is, is very much about taking that approach, working together, working with other areas of neurology coming out of those silos. Would you welcome the initiative? What's your view on the initiative?
Jane Ransom:Oh, it's completely aligned with the way the American Brain Foundation is looking at things. Absolutely.
Sam Pauly:Paolo from your perspective, what's your view on that approach?
Paulo Fontoura:Yeah. I think it's a long held belief by myself and many others that actually the best way to make any progress here is through partnership. There have been many good examples of how that can open up the space for research and treatments for everyone. I think everyone realizes that for one to succeed, everyone must have a chance. Ultimately we want, all of us want, more treatments for these people. It is one of these spaces where collaboration is essential for everyone.
Sam Pauly:Well, thank you all so much so far. Do stay with us because in a moment we'll have a short discussion on prevention and research's role within that. But first let's just take a moment because throughout t he series, we've been asking stakeholders from across the field of neurology to leave a message on our fictitious one voice for neurology podcast, a nswer phone, let's have a listen.
One Voice for Neurology Podcast Answerphone:Hello, you've reached the voicemail of the one voice for neurology podcast. Please leave your message after the tone.
Anne Helme :Hello, this is Anne Helme from the Multiple Sclerosis International Federation. We are a unique global network of MS organizations, people affected by MS, volunteers and staff from around the world. In recent years, research has enabled a rapid expansion of treatments for multiple sclerosis, bringing hope to the many people who live with this challenging condition. Of course, we still have more to do to really stop MS. But we believe that research will get us there, and the cures that people with MS want and need will become their reality. But we have big challenges that need to be addressed by research. What is the most effective way of preventing the disease for people that have MS. How could combination t herapy stop the disease from progressing and put an end to worsening disability? How can we restore neurological function that has been lost and how can we help people who already live with disability to live their best lives? The global neurological research community is inclusive, collaborative, and will do what it takes to answer these questions. And MSIF is proud to be part of this amazing shared endeavor.
Dr Elena Hernandez Martinez De LapiscinaSpeaker 6:Hello, this is Elena Hernandez Martinez De Lapiscina from the European Medicine Agency in the recent y ears, substantial efforts have been implemented by both public and private financial entities to pay their way to cure neurodegenerative conditions. Following t he successful story of SMA I expect new gene therapies for monogenetic disorders, such as, Huntington disease a nd some forms of ALS,and additionally new immunotherapies may come to halt the progression of Alzheimer's disease and P arkinson disease. Due to their increased life expectancy a delay in th e p rogression of th is d isease is a game changer and will reduce longterm disease burden and the agitated economic impact. Proposals for new end points based on artificial int elligence me thods, modeling data coming from wearable devices and mobile applications, may arrive. And we encourage developers to early eng age wi th us regulator to discuss them. To sum up, I believe the next generation for non-symptomatic drugs is coming as the first stepping stone to cure CNS conditions.
Lars Kristiansen:Hi, my name is Lars Kristiansen and I'm the executive director of IBRO. That is an organization that works across the world in different regions and together with different stakeholders to implement research, access to research and equality in research. So talking about research, in the past, we have often thought about concepts research being fundamental, being applied, being clinical. And I think those are concepts that are of yesterday and are not useful necessarily as we go forward because there's a continuum of, uh, of research in a value chain where each, each chain is important to deliver good innovation. And in the end, good healthcare for patients suffering from neurological symptoms and also psychiatric of course. These are concepts that are quite different. New technologies are coming around and optogenetics, DNA editing, artificial intelligence, are just examples of some of those new concepts that I'm thinking of, that are changing the way that we're doing research. I think investing in research is going to be important at every level of that value chain so we can all secure good h ealthcare in the future in 20, 30, and 40 years.
Sam Pauly:Some interesting points there. Now let's return to our guests, Monica di Luca from the EBC, Jane Ransom from the American Brain Foundation and Dr. Paolo Fontoura from Roche. Let's talk now a little bit about prevention. Some might say it's a highly underestimated factor in many neurological disorders. Would you agree with that? U h, P aolo?
Paulo Fontoura:Well, yes, I think it's, it is a truism because we're dealing with an organ that has a very limited capacity for regeneration. Prevention, so stopping damage should be the target always, actually stopping damage from ever occurring. So, so take, for example, a condition like spinal muscular atrophy, where now we can di agnosis t his through newborn screening, meaning that we can diagnose the condition before any symptoms occur. And we d o know already th at t reatment at that stage is the best outcome for any of these patients. So if you extrapolate that to other conditions like Alzheimer's or Parkinson's or autism, et cetera, of course, it makes perfect sense that if you intervene early enough, you would prevent a worse, health outcome. The real challenge is, or has been up until so far, how to identify those people early enough, because we do need diagnostics that are able to have a high degree of sensitivity so we can detect pretty much everyone, but also are very specific so that we don't have false positives. And that has been a challenge, but fortunately I do see adv ances ha ppening the re as well.
Sam Pauly:Monica, let me bring you in. You seem to agree with that?
Monica di Luca:I agree on the fact that prevention is a challenge for the future and should be the target for everybody, including scientists and basic research. I also believe that we should try to help to identify modifiable risk factor to inform the population, and to impact on changing t his modifiable risk factor in order to allow a prevention in a concrete manner. This, again, implies that we understand fully progression of diseases, the super early phases of these disorders. And we need early diagnosis.
Sam Pauly:Jane, just to pick up on a point that Monica made, from your perspective, do you think there is a problem in terms of the preventative measures that need to be taken, that could be taken and communicating those with the, with the wider public?
Jane Ransom:Well, yes, I'll take that question from a non-scientist point of view. I'm a lay person. I think there needs to be a mass movement around Brain Health and t hat's b oth r esearch to fight and understand and treat brain d iseases, but it's also diet, exercise, social interaction, all of those things that I don't have to be a scientist to know that those are helpful in at least slowing the progression of many, many brain diseases and other diseases. So I think that we need to try to get into the public's mind and make this a campaign for people in general to understand.
Paulo Fontoura:Maybe I would add something to Jane's point. It is actually most things that we can do in the preventative space right now are actually pretty much the same ones that people already are familiar with in terms of cardiovascular health, in terms of general health really, so it's not like people would need to significantly learn new skills. We just need to really be much better at having public health measures in place that allow people, encourage people. The challenge we know is how do you scale them up in a societally meaningful way, and that is not trivial. And, but we have made progress, if you look at cardiovascular health or cancer, et cetera, rates have been going down because people have understood it. We probably just need to do a better job in communicating the importance of that for brain health. Actually, the Framingham Heart Study has concluded that just adopting the measures to control cardiovascular disease reduces the incidence of Alzheimer's by something like 20%.
Monica di Luca:I would like to stress the fact that on a modifiable risk factor, like a good diet, keeping us, let's say in a social environment, keep our brain always alert and exercise in any way about all these factors. We need to be more vocal with the society.
Sam Pauly:You just touched on cognitive exercise. What do you mean by that?
Monica di Luca:You have to keep your brain in exercise because our brain is absolutely plastic. It adapts to all the external stimuli, and this is the way we learn. This is the way we keep us active. If we try to exercise and to expose to different environment, to different challenge, we keep our brain resilient and this is a perfect way of prevention.
Sam Pauly:Paulo, let me ask you, what do we mean by the term cognitive reserve? What does that mean?
Paulo Fontoura:It's a term that essentially was created out of the literature that pointed to the fact that people with higher degrees of education, intellectually stimulating jobs, et cetera, seem to be more protected from early onset dementia. So this concept came about that, that the brain is a little bit like a trainable store, that if you do enough things early on that, later on, that protects you from decline. And of course, you know, it is, it is a little bit of a truism as well. We do see this, that, uh, people, for example, that have the same level of brain pathology, depending on how much"training" they've had, essentially, they, they seem to manifest symptoms at different times. So cognitive reserve, at its simplest essentially means what Monica was talking about, keeping your brain active, challenging your brain, frequently, doing things that stimulate you intellectually that make you think differently that make you learn new skills. All of those activities are shown to be beneficial, even if you already have a brain disease.
Sam Pauly:And is the continuing role for research to play in prevention?
Monica di Luca:I really believe that most of the information that we have on prevention is coming from research because all the studies on the physical exercise are showing that if you do physical exercise, you feel better, but you also have new formation of neurons in your brain. So everything is stemming from an observation that comes from research. Translational approach has to be important in all phases of our understanding of brain and understanding of diseases. So I really believe that the translational approach that stems from a basic science observation and can be brought into the not clinical setting, but the human settings is extremely important. Also a basic scientist should be driven by the need of the society. So we always have to keep in mind that we need to transfer our approach, our tools, our discoveries in all phases.
Sam Pauly:Jane, do you think that the OneNeurology initiative, that partnership approach can help with prevention as well?
Jane Ransom:Well, I do think so. I mean, first of all, I'm sure there's more research that can be done in this area, but also I think that these initiatives should take some resources and use them for public education and public awareness. I can only speak from my US perspective, with respect to other diseases, but in our country we've seen mass movements for HIV AIDS treatments, for more money for breast cancer research, to cure polio, but we're not seeing that movement as much as we'd like to see yet, around brain d isease and brain health. So I think there's really room to get out to the public with some of these messages in a way that we haven't done before.
Sam Pauly:I just wanted to pick up on genetics. What do we know about neurological disorders and genetics in terms of prevention? Why do we seem to be slower than other disease areas? Paulo?
Paulo Fontoura:Well, I, I'm not necessarily sure. I agree with being slower. What I think is true is when we do know the genetics and we have very clear diseases in which one gene is almost solely responsible. We can make really fast progress. The challenge for a lot of brain disorders is that they're not monogenic. So there are multiple risk factors, quite a few of them are genetic. So, I think we're making progress and at the same time, I think we'll make progress faster the more we do. Also, because now we have better tools to do genetic screening, genomic screening, so that will accelerate progress as well. Of course there are other complexities, the brain is not, you know, it's not a static organ. I t reacts, adapts to the disease as well, and that adapts throughout l ife. So i f you think about genetic disorders that cause autism, y our brain changes from the brain of a t wo y ear o ld to the brain of a 20 year old. And those changes actually mean that perhaps an intervention, which works really well when you're young, doesn't work as well when you're older. So it's just more complex to think about that translation, but I am very encouraged about t he progress that's being made.
Sam Pauly:Fantastic. Well, I think we'll leave that section on prevention and we'll talk to you all again in just a moment now all t hrough this week of episodes, the real highlight for me has been the diaries f rom people living with neurological disorders. And today we have from Anne Goodchild.
Anne Goodchild:Hello, my name is Anne. I'm 46 years old. I'm French, but I live in Brussels in Belgium and, I have two children. I came to Brussells to work for the European commission where I worked for 13 years and I loved my job I was traveling, Europe to recruit people. And I was lucky to see many places. And I remember at the weekend, my husband used to join me where I was, and it was really fun, fun life. But suddenly six years ago, my life changed from one day to the other. I became so tired that I couldn't function anymore and I had to quit my job. I had two babies, no family in the country. We found out that I had Lyme disease and I was treated for that. U m, after two years of treatment, I was feeling much better, but I was still fatigued, had concentration problems and sleep problems. And I didn't understand this fatigue. I coped with it for years, going from doctor to doctor to understand what was wrong with me, but nobody understood. So only two years ago, I was diagnosed with MECSF in France. MECFS is a very debilitating illness, my fatigue and my unpredictable condition. I can no longer work, planning my family life is also very difficult. Some days I'm able to drive, some days I have to stay in bed and my husband can't re a lly re ly on me to drive the kids to their activities. And some days I can read a hundred pages. And the day after, as I d i d too much, the previous day, my brain is foggy and I can hardly think, organize any thing. I t's an awful feeling, very strange, u m, f e elings and sensations in my bra in. I t' s aw ful. And the hardest thing about MECFS is the lack of research and funding and this is why I'm trying to fight for it. The disease has never been dealt with seriously and millions of patients have been facing hor rible si tuations for decades. Something has to change for ME pat ients; re cognition of the disease, better understanding of biological mechanisms. I'm certain that the program OneNeurology could bring ME awareness, better understanding of the links between ME and some other neurological diseases. Being part of such an initiative could benefit to all patients. Personally, I believe that it would bring hope to MECFS patients. The hope the y've be en waiting for for such a long time.
Sam Pauly:Your'e listening to the One Voice for Neurology Podcast and today we're talking about research. Well, let me bring our guests back in. We were just listening to Anne Goodchild and her experiences. And I wanted to ask you all, what did you think about that? And she was really hopeful about more research? Monica, what would you say?
Monica di Luca:It is very important that research doesn't stop. We should not have the sense that we know enough. And this is a clear example on the postcard we just heard. we need to invest continuously in research. A breakthrough can come up from w herever and we still do not have a disease modifying treatment for many disorders of the brain. So despite the fact that we had a major advancement in the knowledge that we invested a lot, brain research and brain health still is an emergency is a t icking b omb for our society. We need to invest and we need continuous investment. The knowledge should be increased. And also the number of drugs or treatment available for many different disorders that are still without an appropriate treatment should be our priority.
Sam Pauly:Jane, would you like to add anything? Did Anne's message resonate with you?
Jane Ransom:Of course, I mean it's a poignant story and one example of how a brain disease or disorder can really disrupt the life of a person who is afflicted. What struck me about it is how many people know what MECSF is, and do people who have Alzheimer's or who have epilepsy or multiple sclerosis, realize that these diseases are connected and that they have a kinship with the person we just heard from. So that's why I think the OneNeurology initiative is very important and that's why the American Brain Foundation thinks trying to show the connections between the brain diseases is very important so that we understand that this is one fight.
Sam Pauly:So let's talk a little bit more about what needs to be done to support public research. Monica, do you think there's more investment needed in basic neuroscience?
Monica di Luca:My, uh, opinion and the opinion of all the scientific community I would rather say is that we need a continuous support. It's not more or less, but we need a continuity support in this particular domain. I have to admit that in Europe, there have been a lot of investments from the European Commission. There are many different, large initiatives that are funding, actually research that are also collecting funds and strategic priorities from the member state. And this has been very good, but the system generated in our opinion, some gaps and also some fragmentation. And in our vision, what we would like to have is a one voice, like the program for OneNeurology Initiative, that speak together to avoid duplication of funding, avoid the fragmentation and clearly identify the gaps and the needs. This is done for example, through a project that the European Brain Council is coordinating at the moment that has the ambition to generate a common and shared strategic research agenda that should account for whole brain health. The project is called EBRA, European Brain Research Agenda. And this is really a major challenge, b ut this is what is needed.
Sam Pauly:Paulo, what would you say are the challenges of research in neuroscience?
Paulo Fontoura:From my perspective, let's say I'm a researcher trying to develop medicines. I have very specific technical challenges to overcome, again, understanding the biology, understanding where to target medicines. What are the key nodes that one can have an impact on. T here a re technological challenges d eveloping t he r ight drugs or chemicals or biologics or gene therapies, e t c etera. And then there's the whole challenge of actually developing something that w ill be approvable by regulator, that w ill be accessible to patients. It's a very long process,. But there are other challenges. And I think the fundamental challenge is still just the complexity of the brain. The biology is just so different and the brain is such an important organ in the way that it changes throughout life that I don't think we'll ever know enough, but ce rtainly now we have fundamental knowledge gaps that we need to fill.
Sam Pauly:Because it's so complex and because we have no cure for almost all brain disorders, do we often see a higher failure rate in the area of neuroscience research than perhaps other areas?
Paulo Fontoura:I think that, unfortunately, that is still true. That is still true for the larger majority of conditions. The larger majority of common brain conditions. Now one point, which is interesting for people to think about is that if you compare the amount of research money that goes into Alzheimer's, for example, compared to cancer, it's an order of magnitude lower. So now, we're all very optimistic about new drugs for cancer. One is approved almost every other month or, or two months. This started actually back in the 1970s when money for cancer research increased dramatically and in neuroscience, and for example, in Alzheimer's, we still have not done that. So we do need to invest if we're going to reap the benefits.
Sam Pauly:Jane, would you agree that it can impact the view of policymakers as to whether they feel they're getting a return on investment? Would you agree with that?
Jane Ransom:Yes, but I, but I do agree with Paulo, the investment is so much larger in cancer and heart, for example, than in different brain diseases that we need to just put a lot of pressure on our public officials and governments to make the investments that they have made in those other diseases, which had plenty of failures as well to really move this forward.
Monica di Luca:I think it's important if we want to campaign for investment in brain research, that we don't put a fight with other diseases, all diseases are serious they're a tragedy in a family, for a person, for an individual, for citizens. What we would like to have is the same impact and investment for what we believe will be the challenge, certainly for the next century. The numbers of brain disorders, and particularly on n eurological disorders wi ll r aise immensely in the next decade. So this is something that we need to be vocal to our policymakers and our investors. It's not making a comparison with cancer, inve stment wit h can cer has a strong value, but we need a comparable investment in brain disorders because these diseases will have similar impact on our society.
Sam Pauly:And do we need just financial investment or do we need a new approach and new culture as well?
Monica di Luca:We need to work together. We need to set priorities that are common, and we need to sit at the same table with all different sectors, including the private sector, all the possible investors, foundations, altogether, and set a priority list and a shared political agenda on investment, on research on brain health, to be then distributed and shared a nd discussed with our p olicy m aker. One voice to get a result.
Sam Pauly:Jane, do you think we need just a financial investment then? Or do we need a new approach and new culture, a new way of thinking about this?
Jane Ransom:Well, I think the new culture is to think of it as one thing. And in fact, our research shows that if you ask people, members of the public, if they know anyone with a brain disease, only about 20% of them will say, yes, I do. And then if you show them a list of all the different brain deiseases, 86% says, oh, okay yes, I do know someone. with brain disease. So there's a big disconnect between this term brain disease, and what people are thinking in terms of these individual diseases.
Sam Pauly:Well, thank you all do stay with us we're going to have one more chat in just a moment. But before that, it's a busy day on the One Voice for Neurology Podcast answer phone, and I see we have some more messages, so let's have a listen.
One Voice for Neurology Podcast Answerphone:Hello, you've reached the voicemail of the one voice for neurology podcast. Please leave your message after the tone.
Paula Barbarino:Hello, I am Paula Barbarino, I am the chief executive of Alzheimer's Disease International, ADI. We represent well over a hundred Alzheimer's and dementia associations and federations in as many nations around the world. Dementia is the world's largest neurological condition. We estimate about 50 million people live with dementia globally. The number is set to rise to 130 million by 2050. Millions of families are impacted and it's g rowing more in low and middle income countries, many countries around the world that are completely unprepared to tackle this unfolding emergency. And now it is more important than ever. We have waited over 20 years for a new treatment. And in 2021, there is hope that we may see the approval of one. This year we could also see a blood biomarker breakthrough that could revolutionize what's a complex diagnostic pathway. This year's World Alzheimer's Report wil l fo cus on the journey to diagnosis. One of our many challenges is that 62% of professionals globally, still think dementia is a normal part of aging. This is a big problem. It is critical the healthcare systems globally are aware and are prepared. OneNeurology Initiative will enable us to work in partnership with other international organizations in the development of the global neurology actual plan. We hope this plan will sit alongside the WHO global action plan on dementia, which ADI is committed to help become a reality and that this will strengthen our voice globally. Thank you.
Mariel Sander:Hello. This is Mariel Sander from the Healthy Brains Global Initiative. We are a new initiative aimed to transform the way brain research is done. Right now, brain health conditions, both neurological and mental compose 9% of the global burden of disease. Neurological health conditions alone represent 4% of that burden. Investments in R and D have led to remarkable advances in health. However, progress in mental and neurological health is lagging behind severely compared to other conditions. The Healthy Brains Global Initiative is a response to this urgent need. HBGI w ill fund a model of research that i s global, collaborative and embeds the perspectives o f people with lived experiences at every level. We at HBGI have two main focuses for our research. First, we want to better understand and treat brain health conditions that don't have effective interventions. Second for conditions with existing treatments, we want to address the barriers to scaling them up. At HBGI we want to improve the field of brain health research and make a real impact on people's lives.
Sam Pauly:Well, thank you to all the people that have left messages on our One Voice for Neurology Podcast. answerphone today. For the last section of our program today, I'm delighted to welcome back Monica di Luca from the EBC, Jane Ransom from the American Brain Foundation and Dr. Pa olo F ontoura from Roche. I don't think we can have a chat at the moment without touching for a few minutes on COVID-19. I j ust wanted to ask you all. Do you think that that's going to have an impact? Paolo, Let me come to you first.
Paulo Fontoura:Well, I think that this pandemic has really shown what we can achieve when we combine efforts. For example, sharing data really early on collaboration between universities, academic institutes, pharmaceutical companies, lots of partnerships together with governments, with regulators to really try and accomplish something. The sense of urgency. I think just brought everything together really, really nicely. And it is, I, I think a little bit of a miracle of modern science that in the space of less than a year, we have more than three, four vaccines and potentially more. I think that's amazing. That's incredible. If we were to apply that same energy to other fields of medicine and science, I, again, I think we can do more things.
Sam Pauly:Monica, do you think that research will change because of COVID?
Monica di Luca:I really believe in my opinion that the current pandemic COVID-19 taught us a very important lesson that we need to keep in our mind. That is to say that research is fundamental for the health of the society. And without speeding up research, we will not solve problems that are impacting on our society. So in this case, COVID-19 put us, all of us, in front of a n emergency, and we all stood up together, the researchers, the clinicians, the policymakers as well, the society, investors, everybody. And we found possible, potential solutions. What we have to tell everybody is that brain health, brain diseases altogether are a ticking bomb. This is a constant emergency.
Sam Pauly:Jane, do you think there's going to be an impact from COVID-19?
Jane Ransom:I'm very inspired by what Paulo and Monica are saying about the scientific community coming together to create these vaccines and I'm holding on to that. But at the same time, there is an enormous impact on the brain from COVID-19. And I really want to see research dollars going into that issue because we know that it's significant. And we also know from former flu pandemics, that there can be very long-term impacts like Parkinsonian problems, et cetera. So we need in the course of this successful movement to push back this pandemic, we need to put a lot more emphasis on the brain now.
Sam Pauly:Let's have a quick look ahead to what we think is coming up then next, what, uh, what there is to be excited about Paolo, can you tell us anything about Roche's neuroscience pipeline?
Paulo Fontoura:What we're working on are what we hope to be the next generation of mediciens that can truly make a meaningful difference in patient's lives. We know it's possible. Some of the c onversation we've been having here today about the advancement in basic research, technological tools, which are becoming available, some of the shining examples of new therapies coming out for diseases like spinal muscular atrophy, or multiple sclerosis. Those are all things that lend u s hope. We at Roche are very, very committed to c ontinuing to do that. We know as well, that it's going to be a long journey. We're taking a lo ng-term v iew here. One of the themes that I'm so happy to hear coming through wi th t his podcast is this concept of really kind of a societal emergency. This is the challenge of our generation. Disorders of th e brain are th e biggest medical unmet needs out th e re st i ll. A nd therefore we're trying to do our best to contribute towards that solution. And I think we're coming in at the right time because the conjunction of great science, new te chnologies, strong will and commitment tha t we know we can put in place when we want to. I think that's going to spell out better outcomes for eve ryone.
Sam Pauly:Jane, let me just come to you. And I'd like to ask you all this quick question. Is it time, do you think to, to dream big, are we close to finding cures for neurological disorders that are currently being labeled as uncurable today?
Jane Ransom:Well, it is time to dream big and we do see breakthroughs happening in many different brain diseases, and this cure, in fact, for spinal muscular atrophy that we were talking about. So it's absolutely time to come together and to work on further breakthroughs.
Sam Pauly:Paulo?
Paulo Fontoura:I think the size of our dreams should match the size of the challenge in this case. This is a monumental challenge. So the only way to think about it, is to think big, to think big, to go big. And I am optimistic about our chances for success.
Sam Pauly:Monica, do you share Paulo's optimism?
Monica di Luca:Absolutely. I think we have a mission and the mission should be brain health, it has to be clear.
Sam Pauly:What would you all like the OneNeurology Initiative to achieve? What would you, if you can have a real hope or a vision or dream for it, Jane, let me come to you.
Jane Ransom:Public awareness of the need for brain disease research, which will translate into more dollars from both government and the public to carry that research forward.
Sam Pauly:Paulo?
Paulo Fontoura:Raising awareness of the societal impact and the value that therapeutics have to solve that impact, I think would be a fundamental outcome.
Sam Pauly:And Monica?
Monica di Luca:Raising awareness on the public of the impact of all brain disorders together, importance of brain health and importance of funding research to find the solution.
Sam Pauly:Well many thanks to you all that is all we've got time for, for today's episode. I'd like to thank all of our contributors for their time and particularly the guests that we've just been talking to for such a thought-provoking discussion. Now don't forget we'd love you to join the conversation on Twitter you'll find us at@oneneurology_ and you can use the hashtag#oneneurology. We look forward to chatting there. Now do join us again for episode six, which is all about serving and supporting those living with neurological disorders. I do hope you'll join us then bye-bye
Speaker 1:Thank you for listening to the One Voice for Neurology Podcast, produced on behalf of the European Federation of Neurological Associations and the European Academy of Neurology, the umbrella organizations, representing patient organizations and neurologists in Europe, with active contribution from the European Brain Council produced and hosted by Sam Pauly..