Episode 333: 09-10-15
On this week’s show, the 6th anniversary of Fried On Business, we discuss child back-to-school safety with Lauren Book, new trends for family wealth management and investment with lawyer Thomas Handler, Dr. Michael Benatar shares his progress on his ALS research, and Terek Maddox reveals the impact of caring for his uncle with ALS had on him.
Back-To-School Safety
Lauren Book, founder and CEO at Lauren’s Kids, was a victim of childhood sexual abuse for six years at the hands of her nanny. Armed with the knowledge that 95 percent of sexual abuse is preventable through education, Lauren has worked to turn her horrific personal experience into a vehicle to prevent childhood sexual abuse and heal survivors by starting Lauren’s Kids. Lauren’s Kids encourages victims to “shine a light in dark places” and “shed the shame.”
Lauren will discuss back-to-school safety tips, and the new Lauren’s Kids guide to hope and healing disclosure kit – a tool for families who have just learned their child has been a victim of sexual abuse.
Family Wealth Management
Thomas Handler of Handler Thayer, LLP, chairs the firm’s Advanced Planning & Family Office Practice Group. Handler has extensive experience in the analysis, design and implementation of domestic and international business planning, financial and estate planning, asset protection, family office compliance and advanced tax planning strategies.
Handler is an advanced planning attorney focused on the analysis and structuring of sophisticated estate plans and family offices, and handling taxation and business planning issues for business owners, executives, professional athletes, celebrities and family offices.
Handler has spent the summer meeting with some of the world’s most prominent families. We will discuss what these families say are the newest family wealth management trends and challenges for their investments and what Handler is advising them to do to protect their interests.
Help Us Fight ALS
Our UHealth special guest is Dr. Michael Benatar, who has a well-developed research program specializing in Amyotrophic Lateral Sclerosis (ALS) and Myasthenia Gravis (MG). We discuss the “Ice Bucket Disease” and the progress they are making in learning how to fight ALS.
Terek Maddox trains future NFL Hall of Famer Frank Gore and the Miami Dolphins’ Lamar Miller. He will be leading the Walk To Defeat ALS. Terek was the primary caregiver for his uncle while his uncle fought ALS.
We will discuss the impact treating his uncle had on him and why it motivates him to be involved with the Walk To Defeat ALS on Saturday, September 26, 2015, at 10 a.m. at Museum Park in Miami.
Episode 333: 09-10-15 (To download, right-click and select “Save Link As”.
Transcription:
Jim Fried: Alright. Happy anniversary! It is the 6th anniversary of the Fried on Business Show and we’ve got to party all day. In fact, I got Terek Maddox and his friend Rashaad here to help me out. We’re going to celebrate here in the studio. D, you don’t know this yet but there’s champagne chilling in the back. And I want to thank Tom Handler, our guest in the middle of the show for sending us the champagne to celebrate our 6th anniversary. We’ve got our favorite guests today: Terek Maddox – he’s going to be with us talking to the UHealth doctors about how he helped his uncle survive ALS. He’s also leading a walk for ALS; we’re talking to Lauren Book, keeping your kids safe in school and of course I said, already mentioned Tom Handler, the man about protecting your assets. Hey Terek, tell us a little bit about what’s going on at the event.
Terek Maddox: The event is going to be at 26th September, a great event, ALS Walk to Defeat ALS. The actual walk starts at 8:00 AM, the registration starts at 8:00 and the actual walk starts at 10:00 AM and I want you guys to come out, walk, support and join Terek’s Angels.
Jim Fried: Where are they walking? Where are they meeting?
Terek Maddox: They’ll be walking at Bayfront Park.
Jim Fried: How do they get information?
Terek Maddox: You can log on, go on Facebook, find me on Facebook at Terek Maddox and all the info is on my page.
Jim Fried: Alright. Terek is going to be the one to warm up so get there, warm up with Terek Maddox. You’ll see what I do every day this day. Fit for life with Terek Maddox. We’ll be back after this with Lauren Book. D, let’s celebrate!
[commercial break]
Jim Fried: We are back. D was working the phones because we’ve got people that are calling. Why are they calling? Because it’s the 6th anniversary of the show. Who do you got there, D? Genie, alright. Hi Genie.
Genie: Hello?
Jim Fried: Hi!
Genie: Hi, how are you?
Jim Fried: I’m doing great. How about you?
Genie: I’m doing well, thank you.
Jim Fried: How can I help? This is Jim Fried and you’re on the air.
Genie: Oh, great! I wanted to wish a happy anniversary to Jim Fried and to the show. I’m a big fan and also a big supporter of ALS and I wanted to call in as I’m looking forward to hearing from Dr. Benatar.
Jim Fried: Thank you so much. Thanks for calling in. We’ll be on with the ALS segment. It’s 6:45. You guys have a great event over there. Thanks for calling in. We look forward to supporting the cause with you all.
Genie: Thank you.
Jim Fried: Thanks for following us on the show. We got another call there. D, give it to me, baby. Hello? Ron, man!
Ron: Jim Fried?
Jim Fried: Let’s talk about that exploding cigar.
Ron: Happy anniversary to you, my friend.
Jim Fried: Thank you, Ron. If it wasn’t for you I wouldn’t have a show. I’ll admit it to everybody. You invited me on the show for the first time, I said that famous line about which condo do you want to talk about first, which exploding cigar do you want to talk about. That got me my show, Ron. Thank you so much for all your support through all these years.
Ron: I’m proud of you, man. You’ve got more than I could ever imagine with this show and I really want to give my support. Keep it going for years to come.
Jim Fried: Thank you. I love your magazine, Ron. You’re the best. Now we’ve got Lauren Book on the line. Is Lauren on? Lauren? Hey, Lauren, how are you doing? I go to D, he’s trying to put you on the line. Is she on now, D? She’s on. Hey, Lauren!
Lauren Book: Hey, how are you?
Jim Fried: I’m doing great. How about you?
Lauren Book: It’s back-at-school time and I’m doing great because we’re keeping kids safe.
Jim Fried: Well, that’s what we’re all about here on Fried on Business. Me and my wife support you, it’s not just because of your story and because you’re pop. Those are a couple of reasons. But the real reason we support you is because we believe in the cause. I myself as you know was also abused. So, Lauren, how can parents learn to protect their kids when they’re going back to school?
Lauren Book: It’s really important that your kids know his/her address and by the way, I do know that you guys support me and that’s my favorite thing and one of my favorite reasons that I get to be with you guys and talk to and I’m so thankful for that. But we have to make sure that as our kids are going back to school that they know his/her address, home phone number and also the area code. It’s important. The kids don’t even realize we had 786 305 back in my day and I’m dating myself, it was just six phone numbers. Now it’s a little bit more. We also need to have as a really important exciting new kind of thing that we thought of this year. It’s to have a laminated note card with that information that your child can have in a safe place in their backpack.
Jim Fried: For sure.
Lauren Book: It’s also a really great time to start having some of those conversations. When your kids are going back to school, why don’t you come up with a password for your family? Just in case, maybe one day somebody comes in school and says ”I’m coming to pick you up because your mom is sick and you need to come with me”. Your child and your family should have a secret family password. So when your child asks what that password is and that person my not know what it is, your child knows that that is not a safe situation and needs to go to a grown up buddy.
Jim Fried: What are some of the signs that parents can look for?
Lauren Book: It’s important that you have open and honest communication with your child. And when you have remarking changes in behavior, grades it’s time to start asking some questions. If you have a child who is completely potty trained and is now maybe having some accidents or problems with that, and that’s a sign that something may be amiss. If they start sucking their thumb or rocking or bed wetting as I said, those are some signs that something may be a little bit strange. Also, extreme changes in grief. Start asking those questions, how to your child and teacher, if they’re noticing anything in school. It’s a really important thing to have that open and honest communication all around your child but also be an informed parent, take notes, pay attention and really be an engaged participant in your child’s life.
Jim Fried: I know that your team has produced some significant materials both for the classroom use and also for parents. I have Lauren’s Kingdom sitting on my coffee table. Every parent that comes into my house sees it. We talk about it. Tell us a little bit about that.
Lauren Book: Lauren’s Kingdom is probably one of my favorite projects that we’ve ever worked upon. And that is my first children’s book. It kind of goes through Lauren’s journey, she’s getting some touches that are unsafe and how she shares that with her dad. But also a friend of hers named Rodney is being abused in a different way. And they together use their voices to save days. And it really empowers our children to know that they can use their voice to ensure that they can protect themselves against abuse. And it’s really important that the kids know that their voice can help them save days. And they have a right to safety.
Jim Fried: I think that an important thing and I think that it translates into good family communication is to have open and direct dialogue with your child and it’s different for different age groups the way that they would perhaps manifest itself. Lauren, just a couple of minutes, why don’t you talk about the way what might be different for a youngster versus maybe a teenager going to a high school and having athletic events and such?
Lauren Book: It’s really important that you have – again, you’re right – having a dialogue as a family and discuss and decide what’s safe for your family. I know that in my family we never went on a trip or a field trip without having two adults for everyone’s child. That’s a really important thing. And while I know some parents have a certain age limit on cellphones, that’s a good thing but also that you use that device for safety and that’s about communicating with your parents if you need to or you’re at home alone or you’re going on a trip. Those are for safety. But also parents need to be aware that those are devices that they pay for that they are the parents and they should be able to go into that phone, look at that phone and to be able to ensure that you have that conversation with your kids about Internet safety and what is appropriate digitally, that we don’t take pictures that you don’t want you principal or your mom or your dad or your grandfather to see. And certainly, if you do see something like that, you don’t continue to disseminate it that you bring it to the attention of a trust of an adult. It is a very important lesson that children have to learn because the consequences of taking images that aren’t appropriate and disseminating them are very great.
Jim Fried: Many parents don’t have the type of rapport that you and coach do. What would a way that a parent who suspect something, what would a good starter sentence be that they could use with their child? What would you suggest to be a conversation starter on a very difficult topic?
Lauren Book: I think saying something like ”I noticed that you are upset today when your aunt or uncle John came over. You normally don’t have a problem with them, is everything okay?” or ”I want you to know that I’m a safe person that you can talk to whatever the situation is and I’m always here to listen”. I think these kids constantly believe that they’re having to sometimes defend their actions or what’s going on or protect a predator, an offender. It’s really important that just kids know that you’re there to listen. You’re not there to judge, you’re not there to tell them what to do, you’re here to listen, to hear them and to help them make choices that are safe. And again, I think that’s a really important thing, it’s not a parents’ job to be their child’s friend but sometimes it’s important to let them know that you’re here to listen and that you can help them in any ways you perform that they may need.
Jim Fried: Lauren, we’ve only got about a minute left. I know that you and your team got a law pass that makes it a requirement that if somebody thinks that a child is being abused that they need to report that, what’s that line, what are some good links, tell people where they can go. I’m kind of stalling. People, get your pencils out. Okay, Lauren, let’s go.
Lauren Book: You’re right that Florida is actually the only truly mandatory reporting state in the country. Not only is our moral obligation but our legal obligation to report suspected child abuse and it’s not our job to investigate if a child is being harmed. If you suspect it you must report it. You can do that in three ways, you can do that via the hotline. The phone number is 1800 96 abuse. You can also do it online and via fax machine if anybody still has those. But those are three different ways that you can report suspected child abuse in this state. And you can find out more about that at our website: laurenskids.org or dontmissthesign.org.
Jim Fried: Lauren, I want to thank you for coming on the show on a regular basis. I want to thank you for being a hero to virtually everybody that knows you. But most importantly, I want to thank you for the thousands of children’s lives that you’ve helped change, the people you’ll never meet. God bless you, Lauren Book.
Lauren Book: We love you guys. Thank you so much. Give everybody our love.
Jim Fried: We sure will. We’ll be right back after this short break with more of the 6th anniversary celebration of Fried on Business. We’ve got Tom Handler. He is the man if you need to protect your assets. We’ll be right back after this short break.
[commercial break]
Jim Fried: We are back with more Fried on Business and we’ve got a special guest. We’re here on the 6th anniversary show. We’ve got Tom Handler. Tom, welcome back to the show.
Thomas Handler: Jim, it’s a pleasure to be on this show and congratulations to you and your team on the 6th anniversary of Fried on Business, that’s quite an accomplishment.
Jim Fried: Thanks so much, Tom. And I forgot to mention, Tom is the chairman of the firm’s Advanced Planning & Family Office Practice Group. He’s got all kinds of experience analyzing and designing, implementing domestic and international business planning and financial and estate planning and asset protection for family office compliance and advanced tax planning technology. He handles all my friends, he should handle you. And Tom, I want to thank you for sending us this champagne that we’re going to have as soon as we’re done with the show. They’re all excited about that. Tom, you’ve been traveling around and meeting with families from all over the world at a bunch of different conferences and private meetings at the conferences. I’d really like to just have your overview of what’s going on as the family office world continues to evolve.
Thomas Handler: It’s actually been a very interesting environment. There’s a lot going on. I would say the three fronts that have been most no worthy would be: 1 – the investment side has seen recently unprecedented volatility and that is causing a number of reactions and then globally, the impact of lack of security, war, flood, poverty and other issues disrupt a lot the international market. It’s causing a lot of the same phenomena so this has been a whole movement on the investment side. Secondly, family offices have continue to proliferate globally as a best in-class solution the long-term wealth management. And in effect is a business as families set up to run their affairs and in the United States in particular, for US based family offices the research was done last year. Over 50% of US based family offices operate one or more companies. It was a very high percentage of entrepreneurial families that control these offices. And I would guess that globally the percentage would be a little less but not all that is similar. And then the third major area involves this global regulation really spread along by the US trend beginning with the Patriot Act followed by Dodd-Frank, followed by FATCA. And the impact of those laws that are impacting banking and business and access to capital, the velocity of money and just a complete regulatory burden being dumped on the financial institutions as well as many family offices and family business. So those are probably the three most notable things that I’ve seen so far this year though I have a few more conferences that I will be attending.
Jim Fried: First of all, the government regulation on financial institutions and family offices put a damper on the economy but we don’t talk politics here so I’m not going to get into that. But I will say this: it’s that they always taught you is talking about you’re the guy that I have to protect my family’s assets which I love the double aunt Andra. But with all the decline in the markets, is there something somebody can do to protect themselves other than having a quick stop on there or something?
Thomas Handler: Absolutely. Families have been reacting mostly to the international disruption until just recently. So the trends were very similar globally. And there’re a few different things that people do when volatility and risk are present in the operating environment. One is that money tends to be flowing here. That notwithstanding our many issues the US is viewed as the world’s safe haven. And so money is flying here from all over the world and we’re getting tremendous in-bound request for ”can you set up my US family office” or ”can you help my foreign family office” invest and purchase businesses and get involved in the US while minimizing our taxation, our being subdued to a state tax, our liability so on and so forth. So money is definitely coming here in terms of investments themselves, I think that whenever there’s a disruptive market place caused by role events and just bad market in general and the many issues facing China at this point, there’s a flight from risk towards security and safety. So the trends tend to take a couple of different shapes. One is trying to minimize the impact of liability and risk and divorce and lawsuits and government regulation and that tends to evolve structures and so that in part has accounted for the proliferation of family offices, particularly virtual family offices, the tremendous growth of the multi-family office industry. It’s also spawned and off a lot of family holding companies which have done properly, have very significant aspirate protection and premarital planning benefits. And then the asset protection trust of the domestic and international, there’s been a trend in that direction again as people are seeking safety in a start-over-again fund or a fall-back position. We’ve also seen it uptaking premarital agreements and postmarital agreements. Again, when people perceive risk, they want to do anything they can to better protect themselves along with umbrella insurance policies, special risk policies, directors and officers liability type policies. All of those are fairly predictable responses to a difficult environment. And on the investment side, it’s caused a search for commodities and fairly safe investments that can hold their value and a gold run and it’s seen a deep decline though there’re still a lot of people hoarding gold. But in 2014, real estate was one of the most commonly made investments by family offices deploying their money and that trend was expected to repeat itself again this year. So it’s the number one investment being made by, new capital being deployed in family offices. I think what people like about real estate in particular is that not only do you have a commodity that exists and hopefully isn’t going anywhere – for the most part it’s going to be there – but yet has a potential for cash flow. So unlike gold that has no inherent yield or dividend stream in and out of itself, real estate has a possibility of having cash flow and partially protected cash flow as well as appreciation that is not being subjected to taxation so you just dispose of it and hopefully then get capital gains treatment.
Jim Fried: Tom, we’ve got to go to a break. We’re going to come right back. Stick with the thing about real estate because I want to talk about cap gains, I want to talk about making sure you get the right team on your team and I want to talk a little bit more about the Chicago Cubs and what you think is going to happen if they make the post-season. We’ll be right back after this. Wait, there’s somebody in the other room, what’s going on in there? I’m doing fine but I wonder if D has got your mic on.
Felix: How are you doing?
Jim Fried: I’m going great Felix. Thank you so much for coming on today.
Felix: Not a problem at all, Jim. We want to congratulate you from the bottom of our heart for six years of superb work. For being our leader here in the Miami business arena and for teaching us all what we need to know. So Jim, thank you so much for all that you do for us. And here is Mike Castillo to say a few words.
Mike Castillo: I going to be quick, I know you’re going to a break. I just want to congratulate you and your crew. You guys are making it happen, you guys are the best, the Dolphins, the Jaguar and all the people you bring in here, bro.
Jim Fried: Thank you so much, Mike. We really appreciate all the support we’ve gotten from the station, you and Felix and the whole team. We really appreciate it. And with that I’m going to say: D, it’s yours. Thanks again, guys. I really appreciate it. God bless, Felix.
[commercial break]
Jim Fried: We are back. I feel nice like sugar and spice. This is always the signal. That’s where we come back and just now I got a message on Facebook from a person that I’ve met here in the community a number of years ago and that person has also offered to donate their kidney to my wife. I’ve got to tell you, it’s touching. The person may not be a match but it’s very important to get involved with organ donation. I call it ‘giving the gift of life’, the gentlemen refer to this his New Year’s gift to my wife and I. I don’t know what else to say. God bless you, Johnathan. Thank you so much. D, do we have Tom back on? Alright, Tom, how are you doing, man?
Thomas Handler: It’s 72 degrees, sunny day in Chicago so I’m doing pretty well.
Jim Fried: You better write that down, buddy.
Thomas Handler: I was at the Cubs game on Friday. They scored 15 runs and a Grand Slam so it was one of the best performances I’ve seen in a long time.
Jim Fried: I guess you think they’re going. What do you think?
Thomas Handler: I’m sure hopeful. It’s just sad that they have the 4th best record in all of baseball and we’re third in our division but I think the team is for real, they’re young but the future looks bright as I see.
Jim Fried: I think it’s great. Let’s get back to talking about the other thing you’re an expert on and that’s family offices and asset protection. You’ve been going to the conferences, you’ve been meeting the people. Here’s something that I really wanted to understand a little bit better. I know you’ve got Andrew Morton’s philanthropy practice, you mentioned a little bit about what’s going on in Europe, there’s got to be some real discussion in the family office world, especially in the philanthropic part about what are we going to do with the massive migrations here that are going on across Europe. It’s causing what you call disruptions, what are some of the philanthropy things that you’ve seen going on this summer? It doesn’t have to be about the crisis, it can be some other good events too.
Thomas Handler: Really two things of great interest: 1 – I will call venture or incubator type philanthropy where very wealthy families are banding together to get operating companies so that the money goes into some sustainable effort that trains people on ongoing basis create jobs and give them the ability to support themselves as opposed to a short-term charity infusion that disappears when it’s done. So this sustainable entrepreneurial vision of philanthropy is gaining great esteem and I think very exciting because it continues to build and grow and give back. And then secondly, whenever you have these mass movements of people, and they happen during tsunamis and floods and wars and poverty and disease and all kinds of calamities cause these migrations, they are attended by unfortunately human slavery and civil rights abuses, all kinds of horrible things that simply are a part of those difficult issues presented by large numbers of people moving around to countries where they don’t speak the language they’re not from. And there has been an awful lot of work with the anti-traffic and human slavery initiatives, some major foundations working in that direction to both educate people how unfortunately common-place that problem is and at the second hand let some firm steps in place to begin to eradicate it whenever possible and minimize the chances of people falling into those organizations, those criminal organizations that take advantage of them.
Jim Fried: A lot of what you do and deal with has to do with the tax code and I know that the tax code is structured so that there’s no real strategy that’s 100% neutral. What are some of the things that you see are being talked about in Washington that may impact family offices? And I got to believe nothing is going to happen until after the elections no matter what.
Thomas Handler: That would be my guess as well. I think that given where we are in the political process from a timing standpoint there’s not a great drive to put anything in place out of the administration. They’d love to slighter anything they can before being out but that will be difficult I think given the number things already on the agenda. A couple of recent things: one, the treasury is coming out of the number of sets of regulations. And one those affects potential discounting in family holding companies so that continues to be a relatively big deal. And the sense that it’s going to come out sometimes this year that we don’t know exactly when it’s going to come out. But the impact would be to attempt to limit the impact of valuation discounts through family holding companies which are pretty common in business valuation than a state planning. If that happens, if these would mean that people would pay higher gift taxes and higher estate taxes, and it will be much more difficult to pass on family farms and family ranches and family businesses without losing them in order to pay the..or having the estate required to sell them in order to pay the state taxes so that should be pretty interesting. I think that whatever they come out with will be aggressively challenged by tax payers for the most part are very opposed to these rules and a last couple of times it’s been floated to Congress, it was a complete non-starter. They shut it down before it got started. So it’ll be interesting to see what the treasury is able to do in that regard. And there was a recent.. they’ve now added captive insurance companies to the top 10 list of the administration’s perceived abuses. And I think that there’s an awful lot of captive insurance companies out there and make a lot of sense and the right context but I think that there are captive shops were the solution to every problem is a captive no matter course is not prudent and that they’re legitimate and very sound business reasons for these vehicles. But I think they’ve been put in place in a lot of situations where they’re not got fits or weren’t wisely conceived on the front end. So it’ll be interesting to see what the treasury attack looks like that we know that’s an upcoming target of treasury investigation.
Jim Fried: Tom, you’re really modest, you never really talk about your firm much. Why don’t you give us just a second or two on your firm? We’ve got about two minutes left and I need at least a couple of seconds to give audio of me popping this celebratory champagne for you.
Thomas Handler: First of all, I’m glad to hear that you are not popping the champagne before the show but rather waiting until it’s over. But we are a family business, family office, financial firm based out of Chicago. We have people in Washington DC and Palm Beach Florida but for the most part we cover the country and for that part of the world out of here so we travel a lot. And most of our attorneys are equals since a lot of CPA, MBA masters in tax certified financial planner qualification so we try to walk that line between the writing and speaking and being quantitative folks as well and that place well at the high end of the market.
Jim Fried: Listen, Tom, we really appreciate the support that you’ve given the show, the support that you’ve given me and for all that, I want you to be present when I did this. Oh, my God. That’s all for you, Tom, I wanted to thank you so much for being a friend of the show, being a personal friend and mentor to me and I look forward to introduce you to all my friends that need to protect their assets.
Thomas Handler: Jim, Thank you so much and congratulations to you and your team again.
Jim Fried: I totally lost him. Is he gone?
Thomas Handler: No, I’m still here, can you hear me?
Jim Fried: Oh, now I can. I think I messed up everything. Tommy, thank you so much for joining us.
Thomas Handler: Alright, take care, Jim and congratulations.
Jim Fried: It’s my pleasure. Tom Handler, he’s a friend of the show and a great person to have on your side if you’ve got assets to protect. I got a call, well put him through. This is Jim Fried, who is on the line, D? Okay, hi! This is Jim Fried, who have we got?
Michael Benatar: Hi, this is Dr. Michael Benatar from the University of Miami.
Jim Fried: Dr. Benatar is our next guest, D. Well, Dr. Benatar, we’ll be right back. Can you hold for just a couple seconds?
Michael Benatar: Absolutely.
Jim Fried: Thank you so much. Because I want to talk about ALS, we’ve got a lot of folks that are tuned in, that are at the event with ALS. We’ve got a person here who helped a person while they were in need so we’ve got a whole thing going. We can’t wait to talk. We’ll be back in just a couple of minutes talking to our UHealth expert about ALS. We’ll be right back after this. D, it’s all yours.
[commercial break]
Jim Fried: We are back and we’ve got a really important topic here to talk about today. It’s ALS. Some people may know this. Lou Gehrig’s disease. Everybody probably remembers the Ice Bucket disease. That’s what this is. We’ve got Dr. Michael Benatar. He’s a specialist from UHealth. We’ve also got Terek Maddox here. He supported his uncle during his decline as he fought ALS. Terek was there at the end. We’ll talk to Terek also about the ALS run but first let’s talk to Dr. Benatar about what ALS is. Doctor, welcome to the show.
Michael Benatar: Thank you very much. Great to be with you.
Jim Fried: I really appreciate you being on. I thought ALS was, I knew it was Lou Gehrig’s disease growing up. Now you see it as, my gosh it’s all over, even the NFL guys are getting it. Help me out. What is ALS and how does this stuff happen?
Michael Benatar: Yes, it’s the great question. ALS is a degenerative disease. So what that means is that the disease gets worse over time, it progresses and it’s characterized by progressive muscle weakness. It effects the arms, it effects the legs, it effects the talking, the chewing, the swallowing, the breathing muscles and this is a disease that we don’t understand fully why people get it.
Jim Fried: I know that my dad passed. He had multiple sclerosis, another one of these wasting diseases. They’re making progress there I believe. What’s holding us back with ALS? And I don’t mean by that anything other than..it’s just so terrible.
Michael Benatar: It is. I mean, this is a devastating disease and as with other neuro-degenerative diseases like Alzheimer’s, like Parkinson’s, one of the major things that’s holding us back is we don’t understand the cause. And by and large, we don’t understand why people get this disease, and although we are making progress in beginning to understand that. The not knowing the cause of something makes it real difficult to treat.
Jim Fried: It sounds to me like this is one of the reasons that research into this disease is so urgent.
Michael Benatar: That’s absolutely right. Not only is it urgent because we need to understand the cause but this is the disease that is unfortunately uniformly fatal. And so a diagnosis of ALS means that one’s life is shortened and very substantially. And so there’s a real urgency to move the research forward, to develop the effect of therapies.
Jim Fried: You’re talking about therapies before we can talk about prevention I guess. What progress is being made? Please, at least it offers a step down the road.
Michael Benatar: Yes, if you’d ask me five years ago what was the cause of this disease we would’ve said that we really don’t know. What we now know is that the cause of ALS lies in our genes at least in a proportion of people with the disease. There’s probably around 10% or 15% of people and that really is leading to an approach that ‘s based on gene therapy to try to target and treat this disease.
Jim Fried: You talk gene therapy, we talk Pascal Goldschmit’s vision of the future now. Tell us a little bit about what happens, but first of all, what would somebody’s initial symptomatic presentation be?
Michael Benatar: The symptomatic presentation is usually weakness. So somebody may notice a foot drops, the difficulty lifting up their ankle so they’re catching their foot on the curb or on a carpet. They may notice some weakness or wasting or thinning of the muscles of the hands or dropping things. And sometimes when the weakness affects the talking or the swallowing muscles people notice that their speech is slurred or that they’re coughing and choking when they’re eating. And those are the usual and earliest symptoms.
Jim Fried: Terek is nodding. Terek, what did you see? Hold on a second. Go ahead.
Terek Maddox: I saw all the signs and the symptoms that the doctor was explaining right now, beginning of weakness and my uncle was progressively getting weaker and I just thought that he was getting weaker and I was getting stronger at the tender age of 42 and he just started to degenerate.
Jim Fried: Doctor, that brings up a point. It seems to me that people get this early in life. This is not something old. This cuts people short at the wick. If somebody’s got that drop foot or the slowing or the slurring and they get diagnosed, what’s next? I guess they come to you and they go ”Please”, what do you do?
Michael Benatar: I think a few things. Firstly, this is a disease that can affect people on almost any age. It tends not to affect children, this is an adult disease, it affect people in their 20s, 30s, even 70s or 80s. Most commonly it affects people in their 50s and 60s. And I think the message is that if one develop weakness, that’s not explicable by carpal tunnel syndrome or a pinched nerve in the neck or back and certainly that weakness is painless. And it’s that weakness is progressive, you need to see a neurologist soon.
Jim Fried: Doctor, how do people find you? What’s a phone number? Maybe a website? Let’s give them a second and I’ll patter a little while people get some pens and papers. Okay, doctor, how do they find you? Who do they call?
Michael Benatar: A good place to start if you want to find us is if you go to Google and you type in ”ALS Miami” you come to our website which is als-miami.org and from there there’s a phone number, there’s an email address and you can reach out to us very easily.
Jim Fried: Doctor, I want to say for all of the people: God bless you and thank you for at least attempting to address one of the things that scares the living, you know what out of just about everybody. When they hear somebody has this we all know what that means. Ever since I saw the, “I’m the luckiest guy in the Earth” speech. So I want to thank you so much for what you do, for some people that are facing some very difficult circumstances.
Michael Benatar: Thank you for having me on the show and opportunity to talk about this disease and to help us bring the support that’s needed to patients with the disease. Thank you very much.
Jim Fried: It’s my pleasure. We’re going to talk with Terek Maddox now. He’s going to be doing an event to support the ALS research and such. Again, we’re trying to do our part here, doctor. Thanks again so much.
Michael Benatar: Thank you. Bye bye.
Jim Fried: Alright, bye. Terek, one minute, because I want to say some stuff about the show.
Terek Maddox: The walk is going to be at September 26. Actual registration starts at 8:00 AM, the walk starts at 10:00 AM. I want everyone to get up, come out, support Miami for a great cause and I think it’s a wonderful thing that we all learn what ALS is and try to support if you can. I just want to send this shout out to Derek’s Angels, I thank everyone for registering and everyone for all that great support.
Jim Fried: Well I’m going to thank you for what you did for your uncle. Maybe nobody every thanked you. He maybe did not even have the chance. But I want to thank you. I want to thank you for that, I want to thank you for helping me and I want to thank you for helping all of the people in the community that you reach out and touch every single day and for building this team and making this event happen. High five to you!
Terek Maddox: Thank you, Jim.
Jim Fried: I can’t even say enough. That would be pretty wordy on that. But this is it. I’ve got two minutes and I want to say thank you to everybody for helping me be on this show for six years. You heard us with Tom Handler, you heard the champagne we’re going to have here in a couple of minutes, we got RJ stuff filming, I have Terek here, Lauren, Tom Handler, some of my favorite people in the whole world. But who are other people that are important to me? That’s you, my listeners. Because I know you’re out there. You call, you listen, you text, I know, we don’t take a lot of calls because it disrupts my rhythm but I know you’re out there and I really appreciate it. I want to thank our sponsors. Thank you from the bottom of my heart, I’ve been on for six years, it’s all because of the people I’m about to mention: KIND Snacks, South Florida Business and Wealth Magazine, the CCIMs, keep watching, we’re doing some special things with the CCIMs, Terek Maddox, I get the fist bump.
Terek Maddox: Yes, sir, you do, Jim. Thanks.
Jim Fried: Thank you, God bless you.
Terek Maddox: You too.
Jim Fried: UHealth, you heard us talking to the UHealth guy, what they bring is amazing, Warren Henry Automotive, thank you, thank you, thank you. And I’m going to start talking about some of our other sponsors, Saposnik Insurance, Shelly Bloom, Blue Cross and Blue Shield, the Miami Marlins, Lauren’s Kids, the Miami Dolphins, Magnum Energy Solutions, Engineered Tax Services, The Aztec Group, Social Media 305, the NFL Alumni Association, The University of Florida’s Bergstorm Center for Real Estate Studies, UHealth. But again, thank you to you, my listeners. I want to thank also EarlyShares, I want to thank Xpresso Content Cafe, Social Media 305, everybody! Just thank you, it really blows my mind that I’ve been able to do this for this long. Join our community on our Facebook page, follow me socially at Jim Fried, at Fried on Business, Facebook, LinkedIn, Youtube. Website is www.friedonbusiness.com. This is Jim Fried for Fried on Business. I’ll be here as we start year 7 next week. Fried on Business, look for us on 880 AM Thursday at 6:00. Why? Because I love doing this. Remember this is not a rehearsal, this is your life. Person who wants to do something, Terek cracked up. The person who wants to do something finds a way, the other finds an excuse. Now go out there and make it happen. D, take it away!
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