• ALS Crowd Radio Episodes
    • Aug 17, 2014

    ALS Crowd Episode 4: Dr. Summer Gibson on next-generation ALS research

Dr Summer Gibson, M.D.
Assistant Professor of Neurology
Division of Neuromuscular Medicine
University of Utah School of Medicine

Interview date: Friday, August 21, 2014

Discover Health Internet Radio with ALS Crowd Radio on BlogTalkRadio


We talk with Dr Summer Gibson, MD of the University of Utah about the next-generation of ALS researcher and research methods.

Full Transcript:

Seth: Welcome to Episode 4 of ALS Crowd Radio. I’m your host, Seth Christensen, here with my co-cost, Amy Christensen. We are thrilled today to have Dr. Summer Gibson of the University of Utah with us to talk about the next generation of ALS researcher and research. Amy.

Amy: All right. Dr. Gibson attended Rice University where she earned her BA in Biology. She received her MD from the University of Texas Health Science Center in San Antonio. She completed her residency training in neurology at the University of Utah, in her last year as co-chief. During her residency she developed a strong research and clinical interest in ALS. After completion of her residency, she was elected as the first Petajan neurophysiology fellowship recipient. She completed epidemiologic studies on ALS using the Utah Population Data Base and her manuscript was successfully accepted for the publication in Neurology. With the mentorship of Dr. Stefan Pulst, she started an ALS clinic tissue bank repository to identify and further expand the understanding of ALS genes and to explain findings from her Utah Population Data Base studies.

Seth: Welcome, Dr. Gibson.

Dr. Gibson: It’s a real pleasure to be here. Thank you.

Seth: Well, we are honored to have you here and I’m excited about today’s topic. Before we get into the topic specifically, we always like to start off with the question: What is the cause of ALS?

Dr. Gibson: Oh, it’s a great question and it’s unfortunately a very complex one and one that we really don’t have a great answer to. So the things that we know about what causes ALS, we know that there are some genes involved in rare cases. In most cases, there’s no identified gene. But we have learned from genes being involved that there is at least some overall mechanisms and themes. There’s likely a disruption in the protein stability that we’ve learned from our SOD1 mutation.

We’ve learned that this cytoskeleton function including things like auxin transport and vesicle trafficking are disrupted. We’ve also learned that there may be an increased susceptibility to environmental toxins. There are also a few others that probably suggest that there are other areas that promote aggregation and then RNA and chromatin biology also have been shown to be abnormal. So several different things that we’ve seen from genes although again genes we think are rarely involved.

What we’ve also identified and thought of for causes, there’s been a lot of theories about environmental role and I think very strongly that environment has a major role in ALS although I don’t think we’ve really identified exactly what that is. Some of the leading theories though are things relating to head trauma, and then there’s also a neurotoxin BMAA that has also been implicated.

For drugs, as you well know, we don’t really have great drugs for ALS. The only drug that has ever been shown to help slow the disease is a drug called Riluzole or Rilutek. And from it what we’ve learned is that we think that it blocks glutamate transmission into the brain, and that probably tells us something else about ALS although when we look at other drugs that do very similar things, those have not been very helpful for ALS. So it’s hard to know what to do with that piece.

And then I think that there is lots of other potential causes, things like oxidative stress, inflammation, proteins or toxic spread of proteins as well as hyperexcitability or other mechanisms that we believe are probably involved.

Seth: Wow. It sounds like ALS is truly a cross-system syndrome, and that’s quite a list that you just shared. If, by the end of this show, you could narrow that list, that would be helpful. (Laughing)

Dr. Gibson: Absolutely. (Laughing)

Seth: Yeah. All right. Well, as I mentioned, the topic for today is the next generation of ALS researcher and research. We are on honored to have you here today as an ALS researcher and clinician comparatively young in career. Could you help us understand the process by which a medical student becomes an ALS specialist?

Dr. Gibson: Yeah. So I think for most ALS specialists, they are neurologist. So from medical… [0:07:09] [Audio glitch]

Seth: Hi, Dr. Gibson. Welcome.

Dr. Gibson: Thank you. I’m so sorry about that. I don’t know what happened.

Seth: We are not sure either, but we’re happy to take this up where we were interrupted.

Amy: And our listeners held on. Thanks, listeners. We’re sorry about that.

Seth: All right. I believe you were talking about starting with neurological training.

Dr. Gibson: Yeah. So I think most people that work in ALS as the MD typically go through neurology. And so there’s four years of medical school that they would go through and then four years of residency for neurology, and then typically a fellowship is done typically in neurophysiology although many also do a few other fellowships that may come for that same direction. And then some will also do PhD work which will help with their ability to be better scientists too. So there can be lots and lots of schooling, lots of steps and years before they are able to actively get where they want to be.

And how somebody actually does, I think maybe the other question would be why they actually do it and that can really vary. I think a lot of people in ALS have a personal interest and exposure at some point to a person with ALS and that causes them to choose that career direction.

Seth: Now, are all medical students exposed to neurology and are all neurologists exposed to ALS?

Dr. Gibson: That’s a great question. How much of neurology is taught in medical school really varies on the medical school. So every medical school will teach some neurology but then the rotations beyond that really can vary in the amount of exposure to particularly ALS during medical school can really vary. So for some medical students, maybe actually none and for some it may be quite a bit. At our medical school, they will bring in a patient with a disease and so I think that really for many people helps to drive the message home and to really keep it in their memory. But not all medical students get exposure to ALS clinically. I think probably about a quarter of medical students get a rotation where they will actually see ALS patient in clinic.

Seth: Wow. Now, is that unique to the University of Utah or where you attended medical school?

Dr. Gibson: So I think that the end exposure to a patient with ALS during rotations, I think that that’s probably similar across country. I think our neurology lectures at the University of Utah really our neurologist, Dr. Renner, who has been teaching that course, really does a very excellent job of spending lots of time on not only many neurological diseases but really does a great job with ALS.

Seth: Wonderful. Now, maybe loaded question but what on earth would persuade a medical student to jump on the ALS bandwagon? I mean, right now the state of ALS is almost always terminal. What would interest a medical student then choosing a career where most of their patients pass away in a relatively short amount of time?

Dr. Gibson: I think it probably pulls up medical students that are eternal optimists, that believe that they can add and help to care for people with ALS and believe that the answer is coming and that hopefully that they can contribute to creating that answer too. So I think it has to be an optimist. And I think that a lot of people, if they get exposure to ALS, really become very interested in it because it is so severe and it does affect people so severely. And so I think that’s what draws most of us to become doctors and general is that we want to help and I think that there’s lots of need and places to help people with ALS.

Seth: Wonderful. This show falls almost exactly on the four year anniversary of my own diagnosis, and I’ve never been more optimistic and grateful to hear that my doctors and the community feel the same way. Thank you for that answer.

Dr. Gibson: Yes, of course.

Seth: Now, if I can be very personal, what was your personal interest in becoming an ALS specialist?

Dr. Gibson: My personal interest started after my exposure early in medical school and was really kept alive because of my exposure to my mentor, Dr. Mark Bromberg, who is one of the other ALS specialists at the University of Utah. He started the University of Utah ALS Clinic about 25 years ago and has built it up to what it is today and really inspired me during my training to want to be a doctor that helps people like he did; that cared for people like he did and remained optimistic like he does.

And so I think that for me if I didn’t have an exposure to him, I don’t know that I would have gone into ALS. But I’m eternally grateful that I did and have.

Seth: Wonderful. We love to hear about the baton being passed between researchers and clinicians who are optimists. That is a great answer. Now, we will pause for a moment to have Amy invite listeners.

Amy: Yeah. At the end of this show, we’d love to have any questions call in for Dr. Gibson. And the number for that is 516-590-0362. That’s 516-590-0362.

Seth: And once you have dialed in, please press 1 and we will know that you are on the line at that point.

Now, switching gears, how, Dr. Gibson, can we continue to attract the best and brightest and most optimistic young doctors to the field of ALS?

Dr. Gibson: I think what you’re doing probably helps to do that. I think sharing your story and inviting others to learn about the disease and learn about what you’re going through, I think that those will really act to inspire other people to want to go into ALS. Beyond that, I think that continuing to support clinics as well as research are other really important pieces to maintaining clinicians and great research.

Seth: Wonderful. Now, let’s pause for a moment to recognize your fellowship. Can you tell us about the Petajan fellowship?

Dr. Gibson: So the Petajan fellowship is recently started. It’s been around since I did my fellowship a couple of years ago. It was started based off of Dr. Petajan who is the Chair of Neurology at the University of Utah about a decade ago. He was really an excellent clinician and excellent investigator and just an all-around wonderful human being that really we wanted to continue a lot of his work that he had started. Fellowships are something that do require funding in order to maintain and the Petajan Fellowship is really something quite special and allows us to continue the great work already started at the University of Utah and to support fellows in their career goals and hopefully their career goals include research, which is not always the most lucrative but is certainly I think internally rewarding.

Seth: Now, for young newly minted ALS specialists like yourself, are there communities where you communicate and collaborate?

Dr. Gibson: Yes. There are several meetings that are national as well as international for ALS. Some of those meetings are the NEALS meeting which is the Northeastern ALS meeting. And although it sounds like it’s only a section of the country, it’s actually a national meeting and then the Motor Neuron Disease meeting which is an international meeting. Within those, there’s a lot of networking that goes on to meet people and to start up collaborative work.

And then many of the societies like MDA as well as the ALS Association have research grants that are specifically for young investigators, although I think it’s always hard because they aren’t always — you don’t remain young forever even if you are still young. So the MDA grant, their Young Investigator Grant, you have to be within five years of your MD. So even though I’m young, I am not five years away from my MD and so I don’t qualify for their young investigator. But the ALS Association young investigator I do qualify for. So it can be a little bit tricky there.

Seth: Yeah. Welcome to old age, Dr. Gibson. (Laughing)

Dr. Gibson: Thank you. (Laughing)

Seth: One last question before we turn to your personal research. I know you are as well as a researcher, a passionate clinician. Could you talk about the difference the two and the importance of both?

Dr. Gibson: I think an investigator and a clinician can really come hand in hand, but I think as far as being a clinician for ALS, I think the things that you have to be very good at are one to think about what else could be going on and to continue to think about what else could be going on for an ALS patient each time you see them. So not to ever be stuck in the mindset that this person has ALS and that there could be something else causing their disease.

So I think that’s what I try to do every time I see one of my patients is to think about is there anything else that could be causing what’s going on and have we missed anything? And at the time said I would be elated to be wrong. And so that’s one of the things I think the clinician should do and then of course try to think about what symptoms are going on although for ALS we don’t have good medications to stop the disease. We do have many medications that can be very helpful in helping with some of the symptoms that happen so things like extra saliva, we can be very good at helping to control that and thinking about what’s going on nutritionally and breathing-wise and how we can help to support people. So I think those are the things that really need to happen as a clinician.

And then as a researcher, I think the most important things for patients is that our research goes somewhere, that it has a translation that comes back to our patients. And that can be difficult to be able to do because many times we can ask questions but the answers and the direction that our research is heading in is not something that then translates back to the patient. And so it’s a much harder question to try to think of things that translate back.

Seth: As an ALS patient, I appreciate deeply your answer–continuing to look for other possible causes is critical. Thank you for that. Now, coming into your recent research, what is the focus of your research today?

Dr. Gibson: Currently, the biggest focus that I spend most of my time on is ALS genetics. I know that that may seem like an area that wouldn’t relate to most people with ALS because again most people with ALS don’t have genes involved. I think the reason that it is important is that genes that are identified could hopefully lead to an overall mechanism that helps us understand and hopefully identify a medication that may be effective or as I think has been alluded to that ALS may not just be one disease. It may be a syndrome. And so it may require that we identify many of the different potential causes and target them individually, and I think genetics will really allow us to do that.

Our understanding and ability to find genes has remarkably advanced in the past 10, 20 years. And I think that that’s an area that our ability to not only find genes but to then come up with treatments is really probably about to explode and be a very exciting area. So our gene like C9orf72, which is the most common ALS gene, is caused by an abnormal expansion in part of the genes. I hope that that will really someday very soon translate into an ability to be able to help the people that have that specific mutation and then hopefully help the entire group of ALS patients.

But I really do strongly believe that the genetic research is very important and that it will hopefully really truly equate into some answers and then treatments.

Seth: Now, is your genetic research mostly looking for new genes or researching known impact gene?

Dr. Gibson: It’s a combination of both. You can’t look for new genes without looking for the genes that are already known. And so in doing that, we’ve learned a lot about some of the known genes. We’ve potentially identified the same genes but areas of the gene that have never been reported to be mutated before. And so I think that that’s important for our overall understanding about ALS and those genes.

And then beyond the goal would be to also identify new novel variance of genes that are causative or increased susceptibility for ALS. And then beyond that my next goal would really be to identify genes that may be involved in people that have slower progression of the disease and to understand more about why some people progress so slowly. I think that’s a real big key and I am hopeful that a lot of our genetics will allow us to explain that. And hopefully, by understanding that, it will allow us to come up with potential pharmaceutical intervention or an ability to identify the genes and to potentially turn them on from another mechanism.

Seth: We saw through your local NBC affiliate KSL that you had done some work with genetic research using the Utah Population Data Base. Can you speak about that project?

Dr. Gibson: Absolutely. So we started project using the Utah Population Data Base which is a database that connects the original Utah pioneers to some of the current descendants and all of our current Utah residents. So it connects them by birth certificates. Death certificates are linked. Hospital records are now linked and driver’s licenses are linked. So really if a person has spent an amount of time in Utah, then they are likely in the Utah Population Data Base. And that’s really unique because it allows us to think about people and the relationship to other people more distantly than a person is able to recall themselves.

So we are able to look up their fifth cousin and that’s really important because genetically it would allow us to identify people that may not know that they are related to each other and may not know that there are genes involved. So it hopefully will give us the ability to find genes that are harder to find because they likely have what we call decreased penetrance or that they may not cause ALS in each case. And those genes are going to be a lot trickier to find. So I think that’s why we have a very good chance here and maybe a better chance in other places because of that resource.

And then the other work that we have done with the Utah Population Data Base is looking and thinking about what other diseases might be connected, thinking about whether or not there is an increased risk of cancer in either an ALS patient or in their family members and other diseases too. We’re able to do the same thing and think about those relationships. And I think that that may be very helpful too. It sounds very basic but I think if we identify that people always have other diseases that are more common in their family members, that may be very helpful or even if there’s lower risk for certain diseases, then that may also be very helpful in thinking overall about what’s going on.

Seth: Amazing. So we are able to access these records because they are public or does the university have unique access?

Dr. Gibson: The records were handed over from the Mormon Church in the 1970s and then they began to connect those records to current records as well as they went back and connected things like death certificates. So death certificates are connected back to 1903 and there is a public version available that can be done. But the version that I have been able to use, you do have to get specific privileges and you have to ask them and tell them exactly what things you’re going to be looking for. That’s the only way to have full access to it. The one that’s available online is relatively limited and with it — it helps but it doesn’t really allow you to see some of the rare things. It’s done that way to help protect people’s privacy.

Seth: Wonderful. So is this database maintained by the state government?

Dr. Gibson: It’s maintained by the University of Utah.

Seth: Great. We’d love to see more of this. As you know, most ALS patients are less worried about privacy and more worried about breathing. So we would like to cheer on these efforts and ALS Crowd would love to be involved in the cheerleading effort.

Dr. Gibson: Absolutely, yeah. If anyone out there has ideas or specific concerns about diseases, then we could certainly come up with some projects even together.

Seth: Wonderful. We will invite our listeners to submit questions either directly to you or through us here at alscrowd.org.

Dr. Gibson: Great.

Seth: Now, Dr. Gibson, are you involved in any of the clinical or observational trials going on right now?

Dr. Gibson: We are currently active in two clinical trials. One is the SOD1 natural history study and that one is helping us to understand more about people that have SOD1 mutation, and hopefully that will allow us to better design SOD1 clinical trials that will likely be going forward in the next few years. And there is also one act of clinical trial for SOD1. And then the other clinical trial that we are involved in is one that is a little different because it’s really looking for only symptomatic treatment and benefit for people that have excess saliva. And so it’s not for everyone and that’s a study using Botox to help decrease excess saliva.

So not necessarily the clinical trials that we plan to be in the future, we have at the University of Utah participated in many of the big clinical trials and the ones really looking to see what medications may be beneficial in stopping or slowing the disease. We look forward in the future to having some of those to offer to our patients as well.

Seth: Great. And we will look forward to those as well. In the meantime, do you need participants or other resources for current trials?

Dr. Gibson: For the SOD1 trial, that is available for any patients that have an SOD1 known genetic mutation and certainly welcome any although I think that we likely know about the ones that are local. But if anyone hasn’t participated in that and wants to, we would love their participation. The Botox study, it’s something that we think about for our ALS patients and it can be a bit tricky because you can be on some medications and you also have to have normal swallowing. So I think for many of our ALS patients, when they have extra saliva, then they have trouble swallowing too. So it’s a tricky one to find the right person for that.

And then I didn’t mention it but of course the genetic study that I talked about earlier is something that we bring up with all of our patients in our clinic and certainly would welcome patients from other places to participate in helping us understand more about ALS genetics.

Seth: Great. And are you looking only for diagnosed ALS patients or a broader population?

Dr. Gibson: So we’re looking for a broader population in that in our clinic we actually ask that a spouse or a significant other, we ask them if they would be willing to donate. And that seems a little odd because they don’t share the same genes. But the reason that that’s very important is because they actually don’t share the same genes and they’re a similar age. And so that can really allow us to understand what part of the genes are just normal mutations for our population versus the ones that actually increase your risk for ALS. And then as far as family members, we definitely encourage any family members to participate as well, that are related.

Seth: Wonderful. Thank you. Now, our listeners are made up of that population. So we would invite our listeners to contact the university and offer their sample.

Dr. Gibson: That would be great.

Seth: Now, before we go to the phones, I will ask one more question. But, Amy, can you remind the listeners of the call-in?

Amy: Yeah. The phone number is 516-590-0362 and press 1 so that we know that you have a question to ask Dr. Gibson.

Seth: Great. So while we allow listeners to call in, we would like to ask Dr. Gibson, what in your mind is the greatest opportunity for our listeners to get involved in the ALS fight?

Dr. Gibson: I think probably the biggest opportunity is by sharing your story to make sure that other people know about what’s going on with you or what has happened to a family member. And I think the more that people are willing to share their story, the more that others will understand and become interested in being involved. And I think the Ice Bucket Challenge is a real great example of that, something very small that has really spread and really helped to increase the awareness about ALS. I think that things like that are so important. Of course, I also want to make sure that people are of course taking care of themselves and their family members and that they are finding an ALS clinic that they feel like really supports them and as well as their family. I think that those are very, very important things.

And then other things of course we’ve mentioned a lot about research and I certainly think that that is a tremendous gift if anyone is willing to participate in research either themselves or their family members, those are really incredible gifts in helping to improve our understanding about the disease and as well as medications that may be beneficial. And then of course doing things like donating both for research as well as for those clinics that help to support patients with ALS and support their families.

Seth: Wonderful. I know that the University of Utah Clinic is an MDA clinic. Can you briefly talk about what that means?

Amy: Absolutely. So most of the ALS clinics are sponsored by either MDA or the ALS Association. They are both very great resources. So for our ALS clinic, having the MDA support means a couple of things for our patients. One of the things that it means is that we have access to what’s called the MDA loner closet which is an exchange program where when people are no longer using an item that they donated to the MDA and then the MDA is able to free of charge donate it to another person that is in need of that item for as long as they need it. So it may be something like a walker or a shower chair but that somebody else gets used out of that for as long as they need it.

And then probably the most important thing that the MDA does and the real big reason that I think it’s just so amazing is that they helped sponsor our clinic so that we’re able to provide additional support of care for our patients so that the visit is not just a doctor seeing you but it’s also therapists that specialize in caring for people with ALS. So our therapists at our clinic include an occupational therapist, a physical therapist, a respiratory therapist, a speech therapist, a nutritionist, a social worker. And then we also have support from our pulmonologist department as well.

So the MDA helps to fund the salaries of all those additional support staff people, so it’s really an amazing thing. When people come to our visits, they only get charged for seeing the doctor but whatever their insurance does not pay more, then the MDA will pay. And if they don’t have insurance and don’t have the ability to pay, then the MDA will pay for the entire bill. So it’s really an amazing thing because we’re able to take care of patients and take care of their needs so much better than we would otherwise be able to. It just gives us access to so much for our patients. So for us, having the MDA support is absolutely pivotal and allows us to do so much.

Seth: Wonderful. Thank you. We now have a time to go to our listeners. We will go ahead and invite listener one. Listener one, you are on the air with Dr. Summer Gibson.

Caller: Hi. Am I listener number one?

Seth: You are listener number one. Thank you.

Caller: Great. Hi, Dr. Gibson. My name is Todd. I appreciate you coming onto the program today. Actually, a couple of questions. First of all, I was interested when you were talking about your genetic research with ALS patients. How frequent is it for somebody that has ALS to have a family member that is often diagnosed with ALS? Do you have an impression for how frequent that is?

Dr. Gibson: A person that is able to report either a first degree family member, so someone like their parent or a sibling with having ALS, or a second degree family member, that’s about 10% of our patients that come to our clinic. So it’s not that high but it’s still a significant portion.

Caller: One more question. It’s not I know in your necessarily line of research but I was curious if you, by chance, would have any updates. I was just aware of a trial that was conducted I think in Atlanta, Emory University, and maybe it’s now being conducted elsewhere where they are injecting the stem cells into the spinal cord of ALS patients. I was just curious if you were aware of — are there any encouraging results to this point or is it still just in the follow-up stages? I’m just not up-to-date with any of those kind of results. I’m wondering if you had any information.

Dr. Gibson: Absolutely. That’s a great question. The stem cell trial that you’re talking about out of Emory has now gone to Phase II clinical trials, and Phase II is I think really when our clinical trials begin to get exciting because they are starting to look beyond is this medication safe but is this medication actually giving the benefit? And so that trial is now on its Phase II. We have not had any results out of it. It has advanced so that it is including more institutions. And I think that’s really important because it’s making sure that the procedures can be done not only at one place but at many different places with different people performing them. So it’s an important part of that as well.

Right now we just haven’t heard one way or the other but I think we’re very excited to hear about the results in that one.

Caller: Oh, great. I’m glad to hear that. I appreciate listening to the program and I am very interested to hear your answers.

Dr. Gibson: Oh, great. Well, thank you so much for the questions. They’re great.

Caller: Thank you.

Seth: And thank you Caller 1. We do have a number of other callers and would invite them to press 1 if they have a question. Now, while we allow time for that, we’ll begin — well, it looks like we do have a question. Go ahead, Caller 2. You are on the air.

Caller: Dr. Gibson, this is David. I appreciate you being on the show. Quick question about the incident rate of ALS and I don’t know whether your genetic research is hitting on any of these. Do you find the incident rate increasing relative to the size of the population? Is there some cause that has been more prominent within the last few decades to make a higher incident of this disease and then would have been in the past? And then the second question for you is with all of the donations that are kind of flooding in right now with this Ice Bucket Challenge, give us an idea of where that money through ALSA and through the ALS Crowd where that money is going to be used and how effective the increased funding will be in helping push along a fine discovery of the cause of this and a hopeful treatment for it.

Dr. Gibson: Absolutely. Those are really great questions. So to go back to your first one about the incidents and whether or not it seems to be increasing, I think that that’s something that is on a lot of our minds. As far as we know, it appears that from our epidemiological studies that the rate doesn’t seem to be increasing. We think that it does appear to be stable but that there has been an increase in the diagnosis. We think that that’s more likely because of increased awareness and I think that allows for the diagnosis to be made. Sometimes I think in the past, if grandma was very old and she was sick and had trouble walking, they may have not been able to identify the cause and she may have passed away without additional support and nobody would have known that she had had ALS.

So I think the increased awareness has really helped to increase the number of diagnoses. And then also when you become affected by the disease, I think that broadened your awareness and ability to see other people with the disease. Sort of like when you buy a new car and you suddenly see that car everywhere. I think that’s probably if you’ve experienced it yourself that you’ve noticed more of it or heard more about it that that’s probably why that’s occurring. But it’s always something on the back of our mind and something that makes us think about whether or not there are environmental exposures or other things that could be increasing it. Really great question.

And then the second question that I think you asked was about the funds from the Ice Bucket Challenge and what that may help us do. I think that’s really a very great question that I don’t necessarily have specific answers as to what the ALS Association is going to do without those funds. My hope is that they won’t just open the floodgates and fund a bunch of projects this round but that they will increase the funding and start to support more projects overall but that it will be used for a long term push and not just a short-term flood. But I think that there is really a lot of great ideas out there and with the government cutting a lot of their research funding, it’s really important to have other resources like the ALS Association to help fund research.

Right now the funding level for the NIH is so low that it’s near impossible, not actually impossible, but for every 10 projects that are submitted and placed about only one of those will get funded. So it’s very low rate. I think when the funding rate is that competitive and that low, then it results in people having to go to other career options and it also I think makes it so that people stop putting in very novel ideas and instead go with very safe things that they feel that are more likely to get funded instead of something that’s really out of the box. So I think that there is lots of reasons to have more funding and I think it’s really a great thing.

Did you have another question there too?

Caller: No, I think that’s it. I appreciate that. We’re excited about the additional exposure that this disease is getting. We understand what the low incident rate, that there’s not much in it for pharmaceutical companies and things to — you don’t want the incident rate to increase because you don’t want other people exposed to this. But at the same time, you want more people looking at finding a cure for this. We’re just excited to have you and other people being a part of the solution. And now that we’re a part of this disease, you’re right; we are aware of what’s going on and we see a lot of other people that are also suffering through this.

I guess my last question would be for you, as a young female Dr. Gibson, if you came down with this disease, what are the few things, two or three things, you would focus on for yourself to continue to fight this and to keep your health as strong and as viable as you would be able to?

Dr. Gibson: Oh, that’s a great question. I think the couple of things I would definitely focus on family, on leaving lasting memories for my family. I think that that would be an important goal and help to maintain the desire to fight too because I think by keeping those relationships strong, that really helps to motivate a person.

And then some of the other things, we have identified some things that are clearly helpful and extending people’s lives with ALS. Some of those things are things like use of BiPAP and maintaining the current weight. So I think that those are really two big things and probably to go a long way. So those would probably be things that I would focus on. And then I, like many others, would probably want to be involved in research any way that I could to help stop the disease and help prevent other people from having to go through it.

Seth: Thank you, David, for your call and questions. You really asked some provocative things. If I could interject, David asked about how funds will be used at ALS Crowd. We are, thankfully, a very small organization. We began in February and are at this point funded by a few small donations. Those donations have increased with the Ice Bucket Challenge. We commit to our community that any and all funds will be used to advance our agenda which is to bring researchers and patients together to find a cure. Thank you for that question, David.

We have time for one more call. We will open the line now. Caller 3, you are on the air with Dr. Summer Gibson.

Caller: Oh, Seth and Dr. Gibson, thank you for taking the call. It’s a wonderful moment, 15 minutes of fame for ALS right now. What are we going to do with it? And are we being as aggressive as we need? Are we being aggressive enough right now?

Dr. Gibson: That’s a really great question. I think for many of us, it sort of has struck out of the blue and has been really very, very welcome. But you are really right in that are we doing enough to promote things along in the right direction? I think any attention to this disease is really great attention and really important and really helps to push it up in everyone’s minds regardless of their position as a medical student or as a researcher or as anyone on the streets or anywhere else I think that having awareness about ALS is very, very important. Maybe you’ll help to encourage them to come to the aid of someone that suffers from ALS in the future. So there are so many things about it that I think are really important and that increasing this awareness is very, very important.

I think though I don’t have a great answer to what could we do with this attention to really help to promote it along and so it’s not just 15 minutes of fame but a long-lasting moment. That’s a really great question and something that I encourage any of you to think about and to think of any answers that we may help with as well.

Caller: All right. Thank you.

Seth: Thank you, Caller 3. With that, we are coming to the end of the episode. Dr. Gibson, Any last thoughts you would like to leave us with?

Dr. Gibson: I would like to really thank you for allowing to be on this show. I would like to really thank you for having this show. I think that it really is very important. I really applaud you in your efforts. Other thoughts, I would just like to say that I really do believe that answers are out there, that we will find them. And I just really appreciate any patients in being able to find them.

Seth: Thank you. And thank you for your willingness and dedication to fight this and fight with us. We believe in you and encourage you to continue in what you are doing. Thank you for being with us today.

Dr. Gibson: Thank you

Seth: All right. And listeners, please do get out there and keep the Ice Bucket Challenge going forward. It’s critical that we encourage not only awareness but donation. Donate to any ALS-focused charity. ALS Crowd would be grateful to be that charity, but we also are big advocates of organizations like the Association, MDA, ALS TDI and NEALS. Get out there and get wet.

Thank you for your time. This show will be transcribed. The transcript will be posted to our website within a week. Please go out and encourage others to listen in and contribute. Thank you.

About Author

Seth Christensen

Seth is an ALS patient and founder of ALS Crowd, a division of the CrowdCare Foundation. As host of the ALS Crowd Radio show, he interviews top ALS researchers and focuses his efforts on the aggregation of big data to help researchers and patients find clues that will drive to a cure.


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