The results are in! Thank you to everyone who responded to my Facebook post and asked me some interesting (and challenging) questions. I was overwhelmed with the amount of responses and questions I received. I apologize for taking an extra week to post. I wanted to be sure I answered each of your questions in a thoughtful manner. Now, without further ado…
- What is your biggest motivation?- It sounds cliché but it really is to end this damn disease. I’ve gotten to see my kids get married and have babies and I’m grateful for that. But there are so many people who are diagnosed with ALS that don’t get to see these milestones or watch their children grow. It really is the worst diagnosis on the planet and my entire Being is motivated with everything I have to make sure that one day families don’t have to endure ALS.
- If you could still eat one thing off of the value menu at McDonald’s in its true form, not blended together in a feeding tube, what would it be? -@jreboudo100989 IG – McDonalds wasn’t really my thing “pre-ALS” but I love this question so I’ll play anyway! My cheat day consisted of a lot of burritos so if and when I can chew my own food again, I’ll probably head straight to ANY local Mexican restaurant and inhale a giant Californian Burrito faster than you can say A-L-S.
- What more can be done to raise awareness? My husband died from this dreadful disease. There are still so few answers. How much of a donation goes to research? –Sandra Swindler FB – We are working on a Documentary now to raise more awareness for ALS research. I can’t disclose details at this time but we are working with an A-List Hollywood Director on the story which I believe will be a “Game Changer” for the ALS community. I’m happy to let you know that the answer to your 2nd question is 87% of all donations go directly to ALS research in our lab.
- What will it take to have the FDA make more timely decisions on drug approvals and/or human clinical studies. Needless to say, I am a pALS. – Clara Coleman Woodall FB – the ALS Association spends most of their fundraising dollars on Advocacy for these types of issues (and they raise A LOT of money each year – $120 Million for the Ice Bucket Challenge alone). Since their mission is centered around nationwide Advocacy, we need to put pressure on them to work more effectively with the FDA.
- What does someone suffering from ALS want to hear from a friend, and NOT want to hear? What’s the best way to help? -Carrie Stearns- They just want you to show up. Don’t worry about saying the wrong thing. When you are diagnosed with ALS, everyone comes…at first. And then they stop coming around because they are afraid of what the disease looks like or afraid they will say the wrong thing. I’m lucky to have a few close friends that have continued to show up after all of these years. There’s nothing like ALS to show you who your real friends are!
- ALS must come to an end. – Scott Barrow FB – Indeed!
- What would you have done differently with your life, pre-diagnosis…knowing what you know now? – Joe Collins – I would have put less of a priority on growing my business and more priority on my family.
- You’re a Saxon, a kid who grew up in the shadows of the Matterhorn, me too. I worked for you at Life Fitness (my first job after CSUF in 1987). Life changes us – from the boy to the man today, what’s the best thought/mantra/tidbit you’d like share? – Suzie Powanda FB– Go Saxons! Live like today is your last. Love like today is your last.
- What’s the hardest decision you’ve ever made?– To go on a ventilator.
- (Questions 10 – 14 ) Why can’t we hurry up and build more facilities for those that need it now? I’ve been out of work for 5 years taking care of my husband, funds are dwindling, where do we turn for help? Chelsea Boston won’t even talk to me. What do the rest of us do? Other than die along with our loved ones? I’m glad for those of you that have unlimited funds and help, but I’m part of the ones that aren’t so lucky. Please help do something for those that need the help today! Thanks! – Sandra Ybarra FB
- We need ONE UNITED foundation instead of 1,000 doing different things. I’ve put the idea out there of doing a small home that doesn’t require all the red tape. What if we had 3-5 resident home where families can pool their money together to help each other? Instead of me paying for one caregiver for 6 hours a day, we could have 2-3 patients in one home and fund the caregiving. UGH! Sometimes I believe ALS will kill me before it takes my husband who is the one with this crappy ass disease! HELP! – Sandra Ybarra FB
- We feel hopeless, no cure in sight, too many orgs, foundations and associations. –Mike DeBartoli FB
- I’m very fortunate to have been eligible for VA benefits, but the toll it’s taking on my wife and primary caregiver is nothing new for CALS who can’t afford paid full-time caregivers. Now her mother is in her final days so she’s torn trying to be in both places at one time 100 miles apart! – Steve White FB
- How close do you think we are for an effective treatment that pALS can access? I’m banking on ALS-TDI as our greatest hope. – Shelly Austin Hoover FB
Many of you asked about caregiving and housing. I would agree that this is an extremely important issue for people living with ALS today. I’m aware that it takes more resources than the average family has to “live with ALS”. Some of you questioned why my organization is funding research and not these other issues. I’d like to humbly ask you to remember that I’m one person…one man living with ALS. And as much as I hate to admit it, I’m not really famous…yes, I’m well known in certain circles like the fitness industry but I’m no Christopher Reeve. So when I was diagnosed with ALS, I had a choice, I could use my own resources to take care of myself and my family and live in private with ALS. Or, I could use my contacts and connections to fund something that I thought would make a difference.
At the time, in 2005, Academia was mostly researching what caused ALS. I didn’t care what caused ALS…I wanted to fund a cure or a treatment. ALS TDI’s former President, Sean Scott, said it best “If your house is on fire, you don’t run around trying to find out what caused it, you put it out!”. Lynne and I made the decision to create Augie’s Quest as an avenue to fund the best ALS drug development in the world. Since we started we have funded big projects in genetics, drug screening and clinical trials at ALS TDI. We currently have three different clinical candidate therapeutics, and completed a successful phase 2a study on one of them last year and we are working hard to get the other two into trial as soon as possible as well. I am so proud and all of you should be too that ALS TDI created the world’s first precision medicine program in ALS and we have enrolled about 250 people from 6 different countries so far! This new program will uncover subtypes of ALS, help us find potential treatments for those subtypes and speed up clinical trials. And we are about to announce an expansion of that program to include even more people with ALS – so stay tuned!
As far as the questions and suggestions about the ALS organizations combining efforts, I agree but easier said than done. With varying mission statements, boards of directors, operating systems, etc, this is a challenge larger than I’m prepared to explain, however, I’m proud to say that one such collaboration IS in the works and we are a part of it! That is ALS ONE, which is a partnership between ALS TDI, MGH, and UMass Medical. As partners, we have challenged each other to work toward finding an effective treatment for ALS within the next four years. This is an unprecedented partnership – and we use that word deliberately – not a collaboration. There are specific milestones that the three research organizations have outlined and ALS TDI is certainly no small player in ALS ONE! I would also add another example, an effort called Collaboration for a Cure, which is a new effort that ALS TDI is helping to lead in partnership with 22 different ALS organizations here in the US and Canada. We have our next meeting of Collaboration for a Cure in March 2016 from which I expect we will have a much clearer path forward about how we unify and move forward together with those other nonprofit organizations. However, Lynne and I believe that ALS TDI is the most efficient, most advance, most innovative ALS research institute in the world; and while we support and encourage ALS TDI working closely with others, our efforts through Augie’s Quest and our own personal efforts will continue to be directed specifically to ALS TDI.
In summary, if I had the ability to fund housing and caregiving for every family dealing with ALS I would. But I don’t. And so I must continue on with my mission of finding a treatment for ALS because I believe it’s the BEST use of my time and resources. The VA has recently changed their stance on funding caregiving for ALS so let’s hope the US Government follows suit soon so that we can all focus our energy on a cure. I found this FAQ on ALSA’s website about what the VA covers for ALS http://www.alsa.org/als-care/veterans/faqs-new-veterans.html?referrer=https://www.google.com/
I tried to answer all of your questions with as much honesty and integrity as possible. Thank you for continuing the conversation and fight against ALS!