ALS Crowd Episode 6: Barb Newhouse; President & CEO–the ALS Association

Barbara Newhouse
CEO, The ALS Association

Interview date: Monday, September 29, 2014

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Summary

We interview Barb Newhouse, President and CEO of the ALS Association,. Discussion topics include the Association’s mission and vision, the ice bucket challenge, and emerging topics in the field of ALS research.

Transcript:

Seth:Hello and welcome to Episode 6 of ALS Crowd Radio. I’m your host, Seth Christensen, and I am here with my co-host, Amy Christensen. Today we are pleased to have with us Barbara Newhouse of the ALS Association.

Amy: Barbara Newhouse has over 35 years of success in leading strategic initiatives resulting in operation growth and market strength. Her specialties are aligning the needs of a varied group of constituents with the overall mission and working with the grassroots chapter and volunteer network while maintaining a strategic business operations focus.

Prior to the ALS Association, her background included executive roles with the American Cancer Society, the Alzheimer Association, the Autism Society of America, and the Arthritis Foundation.

Barb holds a Bachelor degree in Social Work and a Master’s degree in Health Care Administration. She received a Certificate with the Leadership Institute of Aging in 1994 and has attended various continuing education courses with the Kellogg School of Non-Profit. Barb has recently completed a Certificate in Leadership program through the University of Notre Dame on leading transformational organizations.

Throughout her career, she has served on numerous non-profit Boards of directors including chairing both a community mental health center as well as the Governor’s Conference on Alzheimer’s disease for the state of Iowa.

Seth: Thank you, Amy, and one announcement before we get going.

Amy: The ALS Crowd is excited to announce that this Saturday at 1:00 PM, on the Salt Lake City, NBC Affiliate KSL Channel 5, listeners can watch “Life’s Miracles”, a documentary about our family, about ALS, and the CrowdCare Foundation. It will be rebroadcasted at 9:00 PM.

I told you the wrong time though. It’s Saturday at 1:30 PM on KSL Channel 5. Please join us and you can see the faces behind these voices.

Seth: Thank you, Amy.

Barb: Hi there!

Seth: Barbara, are you with us?

Barb: I am, Seth. Can you hear me?

Seth: I can hear you.

Well, thank you for being with us today. We have received a lot of interest in this interview and we are grateful for your time.

Barb: Well, I am excited to be with you.

Seth: Thank you very much. I know we have a number of callers who will want to call in toward the end of the show. But before we allow the callers to reach you, I would like to open by asking why we do we not know the cause of ALS at this point in history?

Barb: Well, that’s a good question.

ALS we learned about when Lou Gehrig was diagnosed in 1939. It’s a difficult disease. I think part of the reason why we don’t know the cause yet is because it is such a difficult disease to diagnose. We’ve got so many other diseases that have to be ruled out before a person receives an ALS diagnosis.

And in fact, being new to the ALS Association, that was one of the questions I first asked. What’s then explained to me by many neurologists is that it’s a complex disease that affects a person’s ability to eat, speak, walk, and breathe and I know anybody with ALS knows that already. And with ALS there are some genetic components that approximately 10% to 15% of the people with the disease, inherit.

Most people however, 85% to 90% have what’s called ALS the sporadic non-inherited form and so that makes it difficult. It also is because ALS affects people differently. So we know the life span is usually from two to five years after diagnosis and yet, more than half the people with the disease live beyond that time frame. And we also know that some start in their limb areas and others starts with the bulbar form of ALS that affects a person’s speech.

I believe and I know from what I understand from all of the research experts and neurologists that it’s such a complex disease that it’s been very hard to find what causes ALS.

Seth: Well, thank you for that. I know that professionally you are fairly new to the ALS Association but I am excited to hear in your words the passion for this devastating disease and bring it to an end.

Perhaps you could talk a little bit now about the mission of the ALS Association.

Barb: Well, the ALS Association has a mission that is three-pronged. Now I say it’s three-pronged and yet it’s three very interconnected prongs.

So the Association is here to lead the fight to treat and cure ALS through research globally and nationwide advocacy while also empowering people with ALS and their families to live fuller lives through compassionate care and support.

I prefer to look at that and how I see everything is I tend to look at what are the impacts in the system that it has. So in order for us to effectively find a treatment and ultimately, find that cure, we’re going to have to be able to make sure that those people that at the heart of everything is the patient living with ALS and you need to be able to know all about that patient in order to do good research.

And so when we’re looking at what our chapters do and what our clinics and our center of excellence do, we’re looking at the patient and learning about that patient so that we can inform what happens on the research front. So that really looks at care and support and that’s how it ties in to research.

But then there’s this piece over here that is the third prong which is advocacy. And what we know is that by advocating at several levels is that we can increase the dollars that are committed to research through research through NIH and then also we can actually impact the services that are available to people with ALS through good strong advocacy.

So it’s a system that all ties together ultimately leading back to being able to do really good research. So we’ve got, again, three prongs — research, advocacy, and care of individuals with ALS.

Seth: Thank you. Now how many communities or patients does the ALSA support?

Barb: Well, the statistics from 2013 and again, statistics sometimes get behind because of the way data collection systems work. But from 2013, we’re showing at approximately 14,000 people living with ALS registered with our 38 chapters across the nation.

Right now, we have 43 certified treatment centers of excellence and over 50 ALS clinics across the US. The difference between a center and a clinic is that our centers are actually involved in doing research and that they are doing state-of-the-art multidisciplinary care which then allows information to be able to, again, inform research. But the other thing that it does is we’re able to look at everything in an integrated way so that we can increase the quality of life of someone living with ALS.

In an ALS clinic, we have people that meet with a team of ALS experts and those include neurologists, speech therapists, occupational/physical therapists and the ALS chapter along with a nutritionist, and they’re able to get all their questions answered and be able to look at the full holistic approach of working with ALS.

Seth: As an ALS diagnosee, I thank you for that work.

While we all are focused on research and a cure, there is this pesky little detail of living while we do it. And I know that the ALSA does provide an incredible support to many fellow diagnosees.

Now, Barb, you mentioned your clinics, now let’s talk about research and trials for a moment. What research and trials specifically is the ALSA involved in today?

Barb: Right now the areas of research that we’re currently involved in are the area of gene identification, understanding disease mechanisms, stem cell use for disease modeling and therapy testing, finding biomarkers which serve as an indicator for earlier diagnosis of the disease, developing therapies and improving clinical trials.

So we are looking at a number of let’s see — we have a very robust review process that is a peer-reviewed process and we presently find about 100 active research projects and those total about 99 million dollars of the research that we have currently funded.

We’ve also partnered with the Northeast ALS Consortium, we call it NEALS, and clinicaltrials.gov to promote clinical trials in the ALS community. We’ve forged partnerships with government entities like FDA, the CDC and the Department of Defense, as well as other academic institutions, industry, and other non-profit agencies to carry out what happens with trials and research.

Seth: Well, collaboration is obviously a huge part of what you’re involved in. In your view, is collaboration across the ALS community important or are you prepared to go at it alone?

Barb: Oh, for heaven’s sake, you never want to go it alone when you can bring the best and the brightest to the table.

So from my vantage point, the collaboration among the ALS organizations serving the ALS community is very important. It is my hope, it is my goal, it’s one of the things that I started working on from actually the moment I arrived, before all of the ice bucket stuff occurred, is reaching out to organizations that also are involved in ALS, and beginning to take a look at how we could come together to find out where we had business, if you will, in common on which we could collaborate.

Now it sounds like it’s an easy thing to do but it’s a little bit complicated and it takes a little bit of time because each organization serving ALS is a good organization but we each come at it a little bit differently. And so what we have to do is first learn about one another so that we can learn what it is we’re all trying to achieve, what is our major end so that we can then determine where we can collaborate on because we each have a different philosophy about that.

But I am all about collaborating. I’ve talked with, obviously in the last few weeks, I’ve talked with many people and I think the ALS community in the coming few months are going to be pleased with what they’re going to see.

Seth: We are on your team. Please add us to that list.

I know that our friends at Team Gleason are big collaboration people and that they work closely with you and we echo their sentiments that collaboration is critical.

Barb: Absolutely. Clare and I have been exchanging emails trying to figure out a time when we can get together and when Steve and I could visit as well.

Really, if we think about collaboration, it was collaboration that really accelerated with the ice bucket challenge dollars. Because if we go back and we look at the Frates family website as an example, they listed several organizations of which the ALS Association was one so all of that has set the stage for us to move forward in a very strong way and to move forward together.

Hang on one second. I’ve got to just cough before I do it on the phone.

Seth: Sure. While you are having a cough break we’ll have Amy read the phone number for callers to call in to.

Amy: Callers please call in to 516-590-0362 and if you have a question for Barbara Newhouse and ALSA, please push your number 1 on your phone so we know you have a question so we can take your call.

Seth: Thank you, Amy.

Barb: Seth, we’ve got many new opportunities now to fund the collaborative research initiatives and other collaborative type initiatives. I think if all of us come with you and others with ALS to the table and if I can keep you all in my head, in my mind, and in my eye, it’s always much easier to make decisions around how we can work together and collaborate. So I’m all about that.

Seth: And thank you for that. You did mention a little something about this phenomenon we call the ice bucket challenge. Could you speak about your personal experience with that, watching it unfold, and start, and effect?

Barb: Well, personally, it was certainly very exhilarating to watch what was happening with the ice bucket challenge. It started and grew very quickly, it started organically. It started with Pete and Tony and Pat and then with Pete then he and his family sort of took it to another level when it went viral and just spun throughout.

I will tell you, the effect of the ice bucket challenge is it effectively changed the dynamics of the entire ALS non-profit community, the ALS research community; it’s changed the way we all need to look at what we’re doing.

I would say that right now, we’ve come in at 115 million with the ice bucket challenge with the numbers and right now, I can assure you that everyone in the ALS community has been heard from the standpoint about research so a significant portion of those dollars will be used in research.

I’ll just give you a little suggestion that I thought it was going to happen this week but because we’ve got a couple of things we’ve got to make sure are in good order, I would look for some early announcement this next week on Tuesday. So a week from tomorrow, there will be some early announcement that I think will be delightful for the ALS community.

Seth: We are thrilled with that, thank you. We’ll be waiting for that with bated breath.

Barb: Seth, I’ll make sure that Carrie specifically gets to you with some information so that you’ve got it for your show next week.

Then the rest of that is we are in the process of putting together the documents that the Board of Trustees needs. They will be meeting around the 16th of October, I believe it is the date — 18th of October and at that time they will make remaining decisions around allocation of ice bucket dollars. And then we will have announcements within a week or so after that.

Seth: Excellent! How have you gone about this business and you divvy up this windfall?

Barb: Well, first of all, I’ve read my emails. I wish some of them had been a little kinder but I read all the emails of people coming in. I have listened to the research committees, I have listened to our public policy committee, I’ve listened to care services committee, I’ve listened to our chapters, I’ve put together a panel of individuals with ALS to visit with me and I have listened to them.

So I’ve been taking in information from all sorts of people on what needs to be done. And then from then, we’re forming the recommendations that then go for further discussions. We’ve had two special Board meetings and we’ve got a final Board meeting in October, we’ve had special calls with our chapters. So there’s been a lot going on to get information in to then move forward with the various recommendations. That’s why I can tell you that I’m quite confident that a significant portion of these dollars will be spent on research.

Seth: I’m glad to hear that. Please let us know how we can help get the word out and help promote these initiatives.

Barb: We will do that. In fact, Seth, when Carrie brought this opportunity to be with you and Amy today to my attention, I think this is just an excellent way to keep the dialogue going. So I want you to know we will always be a resource to you and willing to come on and visit. And hopefully sometime I’ll get to meet you in person.

Seth: Well, I hope that is soon, as well. Amy?

Amy: We just wanted to encourage our callers again. We’re going to give one more shout out for our phone number as we see people lining up for questions. The phone number to call in is 516-590-0362 and please hit your number 1 if you have a question.

Seth: Great! Thank you.

Now one last question, Barb, before we go to the callers; what is the single greatest opportunity for our listeners to get involved?

Barb: Well, I would say that the first opportunity for listeners to get involved is to make sure they’ve been in contact with their chapter and hopefully they have engaged with their chapter because that’s a good direct way to do that.

Another way to get involved, again, is advocacy. We have a great public policy conference that goes on in the month of May. And this year, I believe what we will be doing is doing a virtual type candlelight vigil so that we’ll be able to be streaming parts of our public policy conference, et cetera, so that there’s a way to be involved even if you can’t come to Washington, D.C.

I think it’s also important that they’ve signed up on the registry because those numbers and making sure that they’ve signed on the registry is what also is able to help us push and advocate at the right levels with the NIH, with CDC, with other bodies in the Regulatory world.

So I would say chapters, advocacy are two really clear ways to get involved and start to be heard. I think programs like yours, Seth, is a good way and now that I know about your program, I am likely to also start listening a bit so that I know what is going on from you guys as caller world.

I’d say sign up to receive our updates. You could sign up on the website so that we can communicate with you directly and keep you engaged and up to speed.

Seth: Excellent. We look forward to you calling in to our next show and heckling the lucky guest.

Barb: The other thing too and you guys have been great about this, the whole ALS community has been terrific on certainly both Facebook and Twitter.

Can I put one personal note on this?

Seth: Oh, please.

Barb: Okay. My personal note is I’m one of those people if you give me a little bit of sugar instead of giving me the vinegar, I’m going to respond a lot better.

If you want to reach out to me directly and send me an email, just please take the time to remember that I’m a human being reading that email. I understand urgency, I get that. I have several friends with ALS that I’ve grown to love in the very short time that I’ve been here. So I get the significance of research, I get the sense of urgency but please remember, I’m a human being too. So when you reach out to me at a human level, I am very good about responding back to that.

I get a little challenged when people decide that they need to go beyond those boundaries and call me names and say unkind things when I don’t know them and they don’t know me. So let’s work at this together and make the bite nips instead of large bites.

Seth: Thank you. I do want to echo what’s Barbara’s saying, we are all on the same team and if we work together rather than against each other, we can do what we have no hope of doing alone. Thank you for that, Barb.

With that, we are going to move to our first caller. Caller ending in 6039, you are on the air with Barb Newhouse.

Caller: Hello, Ms. Newhouse. My name is Caller and I’m calling from Texas and appreciate you being part of this radio program.

I was diagnosed with ALS in April, first of April. I’m still able to walk, I’m still able to talk, I’m still able to move on. The greatest concern that I’ve had is that you mentioned urgency but it doesn’t seem like there’s been an obvious urgency being seen by the ALS community, people like me. Right now I may have a couple more years but so many of us don’t and I’d like to know that I have many more years.

Just for example, you’re a beneficiary of over 100 million dollars, 115 million, I think you just mentioned. And part of that money was money that I was part of raising and many of the people that’s probably on this listening in today has raised. The money just sort of, they’re in your hands and I’m just hoping and praying that ALSA would be a good steward and use this money for research which is what the intent of most donors intended for.

Recently over the weekend, I was at an ALSA Walk. It was great. There’s people in all colors, different shirts, different designs and they gave out awards and such as that, and there was a congressman that spoke, he has some good things. But I really didn’t hear urgency of the matter. It seemed like in the future, in the future. Well, the future has probably been a discussion every year that the ALSA continues to do organizational fundraising and such as that which is wonderful. I know that the services that you guys provide help many, many people like myself all over the country.

I don’t want to take the whole time here but can I ask you a question about the research at the ALSA clinics? What research do they actually do there?

Barb: Well, the research that the clinics are actually doing and the centers are doing are really around clinical trials that are going to be effective in leading to, hopefully, new drug therapies. So they are really collecting the data and the information that actually goes into what they look at in terms of the clinical trials for drug therapies.

Caller: Okay. Yeah, I understand. I attend an ALS clinic every three months and I guess is the information they get from checking my strength and breath is considered research. But I guess what I’m saying is you’re the greatest beneficiary of the money that can truly, truly make a huge difference in research. And as an ALS-diagnosed individual, I’m asking that ALSA takes this wonderful opportunity and finally, after 150 years, not just since Lou Gehrig, but the disease has been known for 150 years — 1869, I think — that there would soon be some kind of treatment, some kind of hope and your organization is sitting on the money that can possibly make that happen now.

Barb: Okay. I understand what you’re saying, Caller. I think it’s important — I need to help you guys understand something else though.

When we put money into research, and as I said, a significant portion of those dollars will go to research. But when you put money into research, you can’t look at just throwing dollars to see what sticks at this point. Let me explain that before everybody gets upset with me.

But here’s the reality. As we look at a project and we go in to fund that particular project, we need to look at the length of time it is going to take for that research to occur. And in order to fund research, you need to make sure that you can fund it and allocate that money for the whole length of time.

So some research projects may require $10 million over the course of three years but in the first year, they are only going to be able to use at three to four million. When we’re looking at this money, we need to be able to look to fund the whole research project as opposed to funding several small projects that then run out of money to finish. And that’s what happens a lot of times in the research world is research will start, it will get funded and then money runs out and they are not able to continue that research project. So what we’re trying to do is to take a look at what it’s going to do, what it’s going to take in terms of funding several different bodies of research but funding the whole of the research as opposed to simply seeding it and then it going away.

I think that the other thing that I would like for you all to know is the good news is because of the monies that we’re going to be putting towards research, we’ve actually been able to leverage those dollars with some other donors who have said “If you guys will give this amount of money, we’ll match it with this amount of money.”

So those are the kinds of details that we’re trying to work out now so that we can make the money go further and I think that’s important to understand.

Caller: Honestly, I understand what you’re saying. I’ve got some boots on the ground, some already developmental research things going on right now that could use some money. One hundred fifteen million dollars is money that can make an incredible difference now. My hope and prayers is that ALSA will understand that urgently today and make some serious decisions that can make a real difference for things.

Barb: I think you will be pleased… I will also say this. Two points. Our chapters, by the way, also encourage people to participate in clinical trials. So it’s very important to make sure that we have participation and enrollment when we’re trying to find a treatment. And that sounds sometimes easy but we also have to work with our clinics and centers to make sure that each person who wants to participate is able to have all the factors needed for that particular clinical trial. So that’s one thing.

The second thing I want to share with you is I’m not sure that people realize that from the time that you start to research a drug until it hits the market for use, the cost of one drug is roughly one billion dollars. So we’re trying as hard as we can, we get the urgency, we get that significant dollars need to go to research. We want you to know though that it can’t stop with just $100 million. We’ve got so much more that we’ve got to do actually in order to really bring a drug or an effective treatment to fruition.

Seth: Thank you, Barbara. Caller, thank you. We have a number of other callers but sincerely appreciate your voice here today, thank you.

Caller: Thank you. I understand. Appreciate it.

Barb: Thanks, Caller.

Seth: All right, on to our next caller. Caller ending in 7896, you are on with Barb.

Caller: Hi, this is Caller, Barbara, do you hear me?

Barb: Yes, I can!

Caller: Oh, good! Congratulations on your new position and what a role you have going forward.

Barb: What part of the country are you from, Caller?

Caller: I am from Summit, New Jersey.

Barb: Okay.

Caller: Yes, and I’ve been an executive leader in communications industry for the past 32 years. So I see almost the opportunity and the challenge that you face almost as a business problem that even commercial profit organizations have had to deal with going forward. And I applaud the ALS Association’s three-pronged mission statement around research, quality of life, and advocacy.

But I think the funding that come in, $115 million, is not necessarily been considered to be used for those three facets of your association and I don’t think you think they are as well. But the second thing that I’m concerned about is I know from my perspective, I’m not considering that funds like that are going to be used to fund a particular organization. I think we need and as other people have been trying to describe to you, we need to identify a singular cause that that money can address. We can’t deal with — here’s an opportunity that we don’t have to deal with bureaucratic organizations and meetings to make decisions. We can use that sort of operation, your traditional method of operation to continue to bring in the revenue contributions as you had over the years and the funding priorities that you’ve been able to direct. But this is something very different.

And what we found in business isn’t the competitive nature and the global nature of our challenges is that we’ve also in businesses had to accelerate our case and has had to make breakthroughs. And if this is an opportunity make a breakthrough. And what we’ve done that has been really successful is look at some best in class businesses or functional organizations that has done a tremendous job in breaking through some barriers and bringing in new revenue and reducing the expenses and increasing market share. Those are the things that are important to businesses.

But to these folks, to people with ALS, they want to live, they want to find treatments, they want to find a cure. So what I’ve been very, very excited about over the past few years is the direction that the organization Stand Up to Cancer has taken. Now this is an organization that Katie Couric and many others have on an annual basis brought together folks from across the entertainment industry and built up a strong funding cut in order to — they have a very simple mission statement. And it has nothing to do with the organization. It has nothing to do with what percentage goes to administration, what percentage goes to quality of life. They have a very singular mission and I just thought that maybe it’s a different perspective for you folks to consider is to look at some of the best in class and that would be Stand Up to Cancer. They have a singular method —

Seth: Caller, if I could interrupt. If you could wrap up and if you have a question, thank you.

Caller: Yup, I do.

It’s very simple. Stand Up to Cancer and what I’d like you folks to consider has a very simple mission and that is to accelerate groundbreaking research that can get new therapies and a cure to patients. They have only two things that they do and it all has to do with research and development. They invest in projects that look at interdisciplinary dream teams of scientists that are hard at work to provide solutions to some of the unique problems of cancer patients and they have a second direction of funding and that is to build together a scientific advisory council and have the scientists decide where is the best directions for their fund.

Seth: Thank you.

Caller: One of their biggest focus areas — so besides those two ways of how they’re doing it, one of their biggest —

Seth: Caller, if you could please wrap up in the next 15 seconds.

Caller: They also are directing their attention at research that has to do with the mapping of the human genome. And I think that’s an opportunity and a direction and a specific market that ALS could possibly take on. This is how we would find breakthroughs, this is how we’ll find them.

Barb: Let me just say this. I think you will be very happy with the announcements coming next week. .

Seth: Excellent.

Caller: Oh, good!

All that I’m saying is that if you look at some best in class organizations and the way they’ve handled these kinds of contributions and the ones that has directed all their monies to research. That’s all I’m asking you to consider because the people that I’ve worked with in New Jersey around this ice bucket challenge and around research and development and business, this is where they’re expecting the funding to go. I mean we’re looking right here.

Seth: Thank you, Caller. We need to wrap up and go to our next caller but our sincere thanks for your comments. Thank you.

Caller: Oh, you’re welcome.

Seth: All right, thanks.

Now if our next callers, do remember that there are a number of other callers that do want to call in. Please do feel free to ask Barb a question. If you want to share more thoughts, please feel free to email Barb. Her email will be on our website.

Now on the caller ending in 1034, you are on the air with Barb Newhouse.

Caller: Hi, Barb and Seth! Thank you so much for this opportunity to hear about what you’re doing. It’s very exciting.

I have a question about you mentioned at the beginning of the show that you were working on genetics. So are there any projects that you see is beneficial that include the collaboration of patient data that could help make really big strides in ALS?

Barb: As a matter of fact, yes. Again, I think you will be thrilled with announcements that are going to be made this next week, a week from tomorrow, and that’s about all I can say about that.

Caller: No spoiler alert. That would be exciting. So thank you.

Barb: Can you tell me your first name and what area of the country you’re from?

Caller: My name is Caller and I am from California.

Barb: Oh, okay.

Seth: Excellent. Thank you, Caller.

I know that all of our interviewees have mentioned patient data as critical for future research. I’m thrilled to hear, Barb, that we have news coming about that.

Barb: Seth, let me just also add that actually it would be ALS Association that actually funded the most significant research related to work in finding the gene in familial ALS. So we are really very much, very much into what’s happening with gene sequencing, gene naming if you will, all of those kinds of things and all the biomarker stuff. So I think everybody’s going to be real happy next week.

Seth: Excellent, thank you.

We have time for one more caller, but if I could give a shameless plug, we have heard a number of our callers that they talk about speed and collaboration. If you have not yet been to answerals.org, please go out and take a look. I know that the ALSA is a fan and we here at ALS Crowd are as well.

We will take our next caller. Caller ending in 6431, you are on the air with Barb Newhouse.

Caller: Can you hear me?

Seth: Yes.

Caller: Okay. I just wanted to thank you, express my gratitude as a member of a family who has an ALS person in our midst, that thank you so much for your devotion and for your taking on this huge effort in behalf of all of those people. Thank you so much.

Barb: You’re welcome. We have to fix this, we’ve got to find a way — we do. We’ve got to have effective treatments… it’s unacceptable to me that we don’t have, after 150 years, at least an effective treatment — cure? Yes, but we at least need to get effective treatment.

Caller: Now may I ask you one thing. as you’ve talked about spending a great deal of the funding towards research which is wonderful and exciting, will there be dollars allocated to individual chapters and if so, how will that be determined?

Barb: Okay, let me first say this. Of the $115 million, roughly 18 million of those dollars were actually raised through chapter websites so those dollars are already out in those chapters and then we have the other dollars that we’re looking at.

The second part of that is that we are working right now around — number 1, I think you’re going to be pleased with another part of the announcement next week that relate to the chapters in a little bit indirect way but it definitely relates to the ALS community. It might have something to do with your centers of excellence.

So spoiler alert there. We are continuing to work with the chapters to take a look at how we can best help them with dollars in their chapters but right now, we’re working with them to also take a look at what’s the most equitable way to do that. But the answer I guess, the short answer to the question is yes. I don’t have all those details worked out but we want to first do is make an early announcement that is likely to have to do with the couple of spoiler alerts that we’ve given.

Caller: Well, thank you so very much and just know that you personally will be in our thoughts and prayers.

Barb: All right. Can you tell me from what part of the country you are?

Caller: Yes. I am calling from Ogden, Utah.

Barb: All right, thank you!

Caller: Thank you so much.

Barb: And I will say we recognize that Utah is an area that we actually need to do some work in because it’s one of the underserved areas of the country.

Caller: Well, excellent! We’ll be excited to help promote and support any of your efforts here. Thank you so much.

Barb: Shoot me an email so we have your name.

Caller: Okay. Thanks so much. Bye-bye.

Seth: All right. Thank you, Caller.

So Barb, we are at the top of the hour. I hate to end the call especially since we have those difficulties in the start. But do you have any thought in closing that you would like to share with our listeners from all over the country?

Barb: I would just simply share with you and I will say this, that I am always open to hearing more thoughts. The future we’ve got now, we’ve got to make it happen, we need the sense of urgency, we need the significance around research. We also need to look at going forward, how we can continue the momentum that we’ve started.

I’m very much interested in hearing thoughts. Seth, I’m happy to come on your program any time and if we can work through issues together and I can hear from the ALS community, I’m thrilled to do that.

Seth: Excellent. We will take you up on that and we look forward to many more calls with you, Barb. We, again, thank you for your time and listening to our callers. We are excited about these changes that we’re seeing in ALS and that we do believe that we can win this battle together.

Barb: Absolutely! And we will do it together.

Seth: Excellent! Thank you, Barb. I will close out with one more reminder via Amy.

Amy: We just wanted to make this really great opportunity for ALS Crowd an announcement that this Saturday, at 1:30 PM on Salt Lake City’s NBC affiliate station, KSL Channel 5, listeners can watch “Life’s Miracles”. It’s a documentary about our family, about ALS, about our new foundation, ALS CrowdCare Foundation, and it will also be rebroadcasted at 9:00 PM that night and we hope you can join us for that.

Seth: Thank you, Amy and thank you, Barb. Keep the pedal to the metal.

Barb: I will. The pleasure is all mine to be here with you.

Seth: All right. And thank you to our listeners. We will post the full transcript of this interview in the next couple of days and please do watch for upcoming episodes.

Have a great day and talk to you soon.

 

Cyclist to solo 423 miles in 26 hours raising $ for ALScrowd.org

Mike Conti’s S2S Ride

On Sept 19th Mike Conti of Park City, Utah will be racing from Salt Lake City to St George to raise awareness and money for ALS.  “Soloing” the Salt-to-Saint relay, a race typically ridden by eight-rider teams, he will ride 423 miles non-stop with a goal to complete the race in 26 hours.

“My goal is to raise $10,000 with all proceeds going directly to ALS Crowd” says Conti.  ALS Crowd is a division of the CrowdCare Foundation, a Utah based non-profit founded by ALS diagnosee Seth Christensen. It was created to help educate and empower ALS patients and to close the gap between ALS patients and ALS doctors/researchers. The Salt-to-Saint relay, founded by Christensen’s brother Clay, has aligned itself with the ALS Crowd, and Conti is “all in”.  Says Conti, “I believe in what they are doing and that is why I’m riding my bike non stop for 423 miles.”

This is not Conti’s first foray into long-distance cycling or ALS fundraising. Earlier this year he rode 517 miles from Salt Lake City to Las Vegas in a race called Saints-to-Sinners, raising awareness and more than $10,000 for ALS.  He is also Salt-to-Saint veteran, having ridden as a member of a relay team in 2012 and making an unsuccessful solo attempt in 2013. According to Clay Christensen, “Mike is an extraordinary example of the type of rider the Salt-to-Saint attracts…disciplined, life-loving, and a little crazy.” Says Seth Christensen, “We are thrilled to have Mike ride for ALS Crowd. His ride embodies the determination and Herculean effort needed to bring an end to ALS.”

Those interested in contributing to and following Conti’s ride can do so at: http://www.gofundme.com/S2Ssolo . Says Conti, “I ride for those given the death sentence of ALS. Please support me in raising both money and awareness.  If you did the #icebucketchallenge and didn’t donate then this is your time to step up and donate.  You will get good karma credits.”

Links

http://www.alscrowd.org

http://www.gofundme.com/S2Ssolo