ALS hasn’t won - ALS ONE! | Kevin Gosnell | TEDxBeaconStreet

what would happen if six thousand US citizens were taken captive in imprisoned every year what would we do as a society to save them I am a 47 year old man married to my best friend and soulmate Cathy with three incredible teenage boys Scott Jake and Joe I have beyond all measures been extremely blessed in life I've spent over 30 years starting designing in building small businesses I have always had the ability to bring out the best in people see problems and find effective solutions for those problems I have always been a student of self-development in leadership I have read over 1,000 books attended numerous seminars and had countless coaches and mentors to help me hone those skills many would say that my best assets are my ability to observe listen learn build a plan and create a cohesive team to get that plan done I have always been somebody that truly has appreciated and admired in respective time I often would say we all have 60 seconds in a minute 60 minutes in an hour and 24 hours in the day it is what we do with that time that separates us and actually decides the quality of our life imagine if Bill Gates and Warren Buffett combined all of their money they could not buy back that last-second minute or hour so if time cannot be manufactured bought or sold it is the most precious commodity in the world I often say that time should never ever be taken for granted or wasted god only knows how much time we truly have and I was about to find out that I did not have the time that I thought I did about a year ago on Columbus Day weekend I was up in New Hampshire with my boys hiking the next day I woke up with a pain in my calf by Thanksgiving that pain had come into my hamstring the week before Christmas we went away on a family vacation and I was I was a coming out of the ocean I stepped on to the soft sand and I felt weakness in my right leg later on that week I had twitching in my left arm and twitching throughout my body after the holidays I went to see a doctor and after many many tests in continual weakness in my right leg I got the news no 47 year old man on top of the world in the prime of his life ever wanted to hear you have a LS a death sentence at that moment time stops and Stood Still all of my goals and dreams stopped all I could think about was all the work I had done to coach and build and develop and grow my great kids that I would not be there to see all those great milestones in life at that moment I knew why I had always appreciated time and always respected it so much because I just was not going to have the time that I thought I would als is a motor neuron disease we lose the ability to use your voluntary muscles eventually I will lose the ability to use my arms in my legs right now I cannot walk my right leg I be able to use it my right arm and shoulder is just about gone eventually I will you lose my ability to brush my teeth clothe myself bathe myself or even feed myself or even itch eventually I lose the ability to swallow causing me to have to get a feeding tube just to get some nutrition into my body as I begin to waste away soon I will lose the ability to speak causing me to be trapped in my own body imagine this for one second you're lying there in bed and a mosquito comes into the room you can see the mosquito you can hear it as it buzz buzzes right near your air and it Nestle's just be fine your ear and begins to bite you you can't swat it away you can't motion to anybody to help you you can't even say anything you just have to internalize it and begin to to try to deal with it internally only eventually you lose your ability to breathe and you suffocate and you die with the diagnosis like that you have two options one option is to go home curl up in a ball cry be depressed cry one I blame nobody for doing for this horrific news and the other option is how do I take my skill set how do I take my assets and do something with them how do I move the needle forward ever so slightly to maybe make a change and maybe make a difference and that's the option that I chose so I began to study in research night and day and I found problems in three basic areas the research doctors fundraising and care we're in Boston we're the medical capital of the world this is the medical Silicon Valley and as they began to research and talk to the doctors I was amazed at what I found the ALS doctors spent 50% of their time trying to raise funds on their own I was dumbfounded I said to myself this has to be the biggest waste of time and under utilization of skills I had seen in all my 30 years of business I just couldn't believe it the next thing I found out is that they didn't quite share all their information but more importantly they did not share their failures and I know from all the things I have done in life I learned more from my failures than I did my successes so if the failures weren't shared there was duplication of a lot of effort in research in the labs because other doctors didn't know what didn't work that all resulted in a complete waste of money and more importantly the most precious come in the world time so in essence I saw inefficient use of time lack of capital individual silos and no real teamwork when I got into the fundraising community I found the exact same thing things weren't much different we had all these little fundraising groups all around the area and I realized and found out that ALS is the most fractured fundraising group in the entire country and I saw a lot of the same things so if they worked if they worked individually they weren't leveraging the power of a team they weren't utilizing their assets and we had a lot of duplication in marketing and administration and management cost all of this led to an inefficient use of capital and a waste of the most precious commodity in the world time when it came to cure a loss looks like this when you get this disease you end up losing your job you have to quit your family goes into financial crisis the typical family the typical person is you know typical families and is enormous emotional challenges and everything that you need to buy in your house insurance doesn't pay for it might be just a seat to get you to get you up off the chair it might be a toilet seat that's mechanical to help lift you up it might be a lift to get you up the stairs or a lift to get you in a house or ramps to get you around or a scooter like this as like mechanical legs all of this costing tens of thousands of dollars while your family is watching your decay you're an emotional an emotional crisis so there's nonprofit groups out there that come in and kind of help try to help with these situations but they don't work in unison with the clinics in the hospital's so you have because this complete disconnect and more people would give to research than they would cure so there's a real lack of funding there I soon realized that there was no ALS team in the greatest medical community in the world yet yet the greatest ALS doctors in the country if not the world were right here in Boston and I said to myself how can I use my skills and talents to try to bring this together and make a difference so I said maybe I can get them together and become a team so I started to call I started to meet with them I got a conference room and Mass General Hospital and I invited them all to come the grit the greatest doctors in the ALS world to come into coming in this conference room and they were dr. Bob Brown who works at UMass Medical Center is considered the Godfather of ALS doctor Marisa Kovac who is a chief of neurology of Mass General Hospital and considered the godmother of ALS dr. Steve Peron who runs the only biomedical company in the United States that's exclusively for ALS and a non profit doctor Nozomi Tasi is an upcoming bright star in the world of ALS who's working on the first biomarker for ALS and teaches at Harvard and and Ron Hoffman compassionate care als who who basically is taking a thousand families from death to diagnosis over the last 20 years the first meeting was interesting none of them fought each other we're going to show up but they all did and we got into the room and the one-hour meeting turned into three hours and you could see you could see these bright minds start to open up at the end of the first meeting dr. Brown said I'm willing to clear my calendar on Monday if you guys can come back well nobody says no to the godfather of ALS and they all said okay if you are clear in your calendar we'll be back and they all came back on Monday and another few hours later and another meeting later and I began to see some amazing things happen I began to see kind caring dedicated people that are passionate about the what they do start to get passionate about helping each other we decided to break things up into committees we made a marketing committee we got the development committee of all the institutions and they all came together in we said okay if these guys got together as a team how could we support them how could we help them what could we do to make a difference as time continued to go on we we also created a care team where Ron Hoffman worked with some of the care people to decide how could we build this care plan that could be the model for the United States most importantly the science scientists started to get together and create a science plan with the premise that if we had to create a treatment in four years or less how could we do it as a team how could we do it as a partnership and I am proud to say that we are now launching a ALS one it is unprecedented the greatest institutions in the United States and medical and the greatest ALS doctors in the world have come together as a team to try to create a treatment in four years or less to leverage their skills and talents to utilize the most important asset in the world their time simultaneously well this was going on I knew that we had to create a team in order to raise funds I knew that we had to bring the friends and families of people with this horrific disease together as one team so I created I created a nonprofit organization called the ALS Knights and the idea of this was to get an army of dedicated people together to help fight this disease and raise money for ALS one in the first 60 days amazing things happen we had over 700 people become a night and what was a night you had to be willing to do five things be committed until is a cure do at least one fundraiser a year display all ALS 1 and ALS night logos call-to-action as needed and be mindful of the other family members of families in the community that had ALS in those first 60 days that we started this we had people from all over come help we formed a marketing team a fundraising team a sponsorship team people from all over the disease began to dig and attacked us and say I wanted to come in I wanted to help they heard what we were trying to do we had in a short period of time in those 60 90 days we were in 22 fund raises raised over $250,000 we're expected to raise a half a million dollars by July 1 and we have people joining the organization every single day and we've created 32 fund raisers already in the pipeline for next year absolutely amazing and it shows you what can happen when people come together as a team and decide to utilize their skills leverage their talents and most importantly leverage the time imagine if 6000 US citizens were captured and imprisoned every year what would we do as a society to save them ALS captures it in prisons 6,000 people every year except they're imprisoned in their own bodies should we as a society accept this is this okay it has been 76 years since Lou Gehrig has died in 465 thousand people have died this horrific death we had the ice bucket challenge and it helped with awareness and some much-needed money for research but now what we need the research doctors the family the friends anybody that has been connected to this disease to come together as a team ALS one I know all of this that I have done is not going to help me but I hope that it helps the next husband father or family that might get this horrific disease maybe just maybe not have the outcome that I will have I ask for everybody that is connected to this or is passionate about this to step up and help now is the time to make the change I say this speech today in honor of my three kids Scott Jake and Jo that they will realize if you stand alone you get stuck if you come together you can go far in that this is my last lesson to them and then through this journey they see strength courage and grace thank you

Channel: TEDx Talks

Views: 27,714

Rating: 4.9029651 out of 5

Keywords: TEDxTalks, English, United States, Health, Disease, Hope, Research, Struggle

Id: OvCUhA2KuAY

Length: 16min 22sec (982 seconds)

Published: Wed Nov 25 2015