18 Holes For 19 PALS

The 2015 Ice Bucket Challenge will be different. You need to understand that. This year, rather than just shout "Donate to ALS!" in your ice bucket video,  direct your funds and your challenge to a specific ALS charity. 

We are proud to be listed among the amazing small charities on alsicebucketchallengers.org, a directory of small groups who work with families if ALS daily. The groups are divided into three segments:

-  Research

-  Patient Services

-  Advocacy

So pick a charity (hope-JG.org is a good one), dump your ice, challenge 3 friends and DONATE!

The 19  honorees shown in this video represent hundreds of thousands of families affected by ALS over the years. Donate for them. But choose a charity that tugs at your heart.

Thanks for getting wet and cold.

What Would You Do For A Dying Friend?

What would you do for a dying friend? Bruce Edwards was caddy for golfing great Tom Watson for 30 years. They were best friends. In 2003, Edwards was diagnosed with ALS. That same year Watson, with Edwards by his side, had a dream round at the U.S. Open. Watson shot 5 under par to grab a share of the first round lead. He used that moment to bring attention to Edward's battle with ALS. That was the last tournament Bruce Edwards caddied. He died 5 months later, at age 49. Watson has kept Bruce's memory alive by raising millions for ALS and doing the ice bucket challenge last year. 

The 18th hole at the First Annual Hope-JG Golf Scramble will be dedicated to Bruce Edwards. Each of the 18 holes that day will be dedicated to a family with ALS. Join us in August 18th at beautiful Va Halla  golf course in Cumberland. To register to play or to sponsor the event, go to: hope-jg.org.

If you can't make it or if you don't golf, please feel free to donate online at: http://www.hope-jg.org/#!donate/c1ghi or by sending a check to: PO Box 1805, Windham, ME 04062. Donations of $25 or more made between now and 8/18 will get a Hope-JG tee shirt (please specify size and gray, red or black color preference). We have several individuals who have generously sponsored the event as well. Sponsorship info at hope-jg.org.

Finally, if you're looking for a place to donate your ice bucket money this year, please consider donating to our foundation. You will help us get closer to building a world class ALS/MS Residence and promoting innovative technologies which enhance the lives of the disabled around the world.

#DoSomething

Man On A Mission

I don't know Chris Rosati. Well, I sort of know him, as well as you can "know" a Facebook friend you've never met. As well as you can know someone from the multiple "On The Road" segments of the CBS Evening News of which Chris has been the subject. As well as you can someone who has become a brother in arms by virtue of an ALS diagnosis.. Maybe I know him better than I think.

I reached out to Chris, as I suspect many did, with a Friend request on Facebook after the first "On The Road" story called "Grand Theft: Donut"(http://youtu.be/eMNVJZRIU9s). He graciously accepted and we've Liked some of each other's posts over the past year or so and exchanged a few messages.

Chris was one of the first people on the wish list of honorees for our foundation's first annual golf scramble coming up this August.

(http://www.hope-jg.org/#!golf-scramble-splash/cd1r). We will be dedicating each of the 18 holes to a person fighting, or lost to ALS and their families. We are honored to have Chris among the 18.

Chris is a man always on a mission. He's gone from being the "Krispy Kreme Guy" to a project called "The Butterfly Effect" (http://youtu.be/90PUAMv7-DM). 

Now, Chris has raised the bar for himself and for families with ALS across the country. More importantly, he's raising the bar for arguably the preeminent brand for ALS - the national ALS Association (ALSA). The same ALSA that collected around $120M from last year's Ice Bucket Challenge (IBC). Chris has publicly challenged the ALSA to issue a statement that they will cure ALS by the year 2021. To read the full text of his statement go to 

http://by2021.org. 

The Hope-JG Foundation has officially partnered with Chris and the "by2021" initiative. We are proud to do so. 

The IBC was a global phenomenon which brought ALS into virtually every home, back yard, locker room and office building in the developed world. With the leadership of Pat Quinn and Pete Frates, the IBC will happen again this year and the new motto is "Every August until there's a cure". Awareness of ALS has been raised. It's now time to focus on a cure. No need for brochures, balloons and banners. It's time to truly support the researchers and labs doing the heavy lifting. 

Chris has a plan. Like I said, he's a man on a mission. I'll let him roll his plan out when he's ready. Based on an email from him today, he's logging some heavy miles on his wheelchair and burning up his speech generating device.

For now, join us on what will be Chris' greatest mission to date. Visit http://by2021.org and start using #by2021 and #believe in your Tweets. 

It's time for a cure. And 6 years is more than enough time...if we get serious.

#by2021.

Our 5 Hour Vacation From ALS

It's been a typical roller coaster week for us. The usual appointments with my PT, Massage Therapist and Visiting Nurse. The typical stacks of medical forms and endless phone calls for Linda. A meeting for the foundation and texts and emails from friends and associates. Living with ALS is always an emotional see saw. Each new day, sometimes each new hour, can bring unspeakable sorrow or, at best, no change from yesterday.

But today was different. On this Saturday, we took it easy.well, to be honest, I took it easy. Linda never gets a break from caregiving. Nevertheless we moved at a more leisurely pace, pushed emails and most of the outside world aside and by 2 PM we were ready to go somewhere. 

I know that being ready to take on the day by 2 PM sounds odd, but that's the reality of ALS. Everything takes time. Toilet time? 25 minutes. Washing up? 15 minutes. Change of clothes? Brushing teeth? 20 minutes. Breakfast (2 bags of Liquid Hope)? 90 minutes. You get the picture. Everything a "normal" person does into two or ten brisk steps, a quick reach and a few efficient hand movements, it takes me ten times the effort, 5 times the time and double the people power.

So, at 2:30 were loaded in the Hopemobile and off for parts unknown.  Our vacation from ALS begins. Linda was quoted in a news article, as she told the story of the day a group of friends lugged me up Bradbury Mountain! that on that day, "John didn't have ALS". Today was the same kind of escape, after grabbing iced coffees and sandwiches, we drove to our favorite spot on the campus of Southern Maine Community College, under the shade of a large Beech tree overlooking Willard Beach. Linda and Matt spread out a blanket, Hope (our dog) laid on the grass and we all dug into our food. Even though I get most of my nutrition through a feeding tube I can still eat by mouth and today was a ham and cheese sub with mayo. Yum.

Linda chatted with Matt, I commented occasionally, we all laughed and Hope just watched the few people (and an occasional dog) who wandered past. And the sound of the surf, seagulls snd distant people on the beach melted away any inference of ALS. My wheelchair became a recliner and for those few, precious hours I didn't have ALS. Things were truly "normal".

Tonight, as I sit here with my feeding tube connected to a pump on an IV pole, watching a Netflix movie with Linda, ALS is back. It's back, but it's sleeping. My shower only took an hour tonight. And tomorrow as we wake to get ready for church, who knows? But today, we had a vacation. Precious time without The Monster.

. 

How Much Do You Know About ALS After The Ice Bucket Challenge?

May is ALS Awareness Month. Last summer millions of people posted videos on social media dumping buckets of ice water over their heads. The Ice Bucket Challenge (IBC) raised over $100M for the ALS Association and millions more which benefitted other research and advocacy groups. There were news stories and "ALS" was heard for months on TV and around the water cooler. People were moved to action in a way I've never seen.

But, and there's always a but, after the final check was written and the ice buckets were filled with sand for the winter up north or filled with tools or toys down south, how much did YOU really learn about ALS?

It's an important question. One that requires a little soul searching. Did you do the IBC because you were challenged and wanted to post the funniest video of all your friends? Did you do it because everyone else was? Or did you take the next step, research ALS and the devastating impact it has on over 30,000 families each year? And did you then do something?

Please don't misunderstand. I have nothing but respect and thankfulness for the millions of you who dedicated videos to me and the thousands in my "ALS Family". The intensity of focus, joy and funds raised continue to bring back fond memories.  Pete Frates and Pat Quinn, the masterminds behind the IBC, deserve our eternal thanks for turning a silly idea into an epic, worldwide fundraising event.
 
But (there it is again), if the IBC was at least partly about awareness, how much awareness is in place today? How often do hear the acronym "ALS" on the news or around the water cooler today? I'm concerned that we've lost the momentum created by the IBC. That it's the same people and groups, mostly driven by families and advocates who have been touched by ALS, who carry on the fight. The rest of you have picked up life as you did before the IBC. 

We in the ALS community use  the word "awareness" often. But is awareness the same as education? Webster's defines awareness as: knowing that something (such as a situation, condition, or problem) exists. By definition therefore, awareness isn't enough. Families fighting ALS need people around the world to have a deeper understanding of this horrific disease beyond "Oh yeah, I did that ice bucket thing last year." 

Education goes much deeper than the statistics. We can spout all the facts and figures until we're blue in the face. Most people only develop an intimate knowledge of a subject by experience. We need replace the word "awareness" in our lexicon with "experience". 

The amazing team at HARK (https://www.hark-als.org/)  have recognized this and are taking action. They are doing something more. They will soon be announcing "The Get Involved and Help Tour"  (http://youtu.be/i3lVZo8UHqo). The premise is beautiful  in its simplicity: The tour will target a college or university in each of the 50 states and partner that institution, it's students and faculty with a family with ALS in that state.

Imagine, in addition to gathering on campus to film a mass ice bucket event, nursing students spending time with an ALS family. Learning the practical application of their vocation and gaining insight of a disease they might otherwise see mentioned in a brief paragraph in a textbook. Imagine students from other academic disciplines spending time with the same family, getting to know their daily struggle and walking away with changed hearts and minds. Imagine that. 

Yesterday I Tweeted a quote from Dietrich Bonhoeffer that goes "Action springs not from thought, but from a readiness for responsibility." I added #DoSomething. So, when the ice bucket challenge comes around this year, and it will and it's worthy, take an extra step. Find an ALS family and get to know them. Volunteer to help one of the many ALS advocacy groups. Get your hands dirty. Do something.

Nutrition and ALS: An Interesting Follow Up

Two days ago I posted a blog about sugar. It's been hand down our most read, shared, retweeted and talked about article to date.

This morning, before Linda and I got mired in yet more paperwork, I stumbled upon this article on the Harvard Health Publications website titled "Supplemental nutrition drinks: help or hype?"*

While the article addresses supplement drinks targeted for the broader market, it also clearly addresses formulas intended for specific medical needs including those who can't swallow. In my time chatting with others about feeding tube formulas Boost and Ensure have been on the list for some while Jevity and Osmolite, designed primarily for use with feeding tubes are also mentioned. I found these two paragraphs of particular interest (emphasis added):

"Supplemental nutrition shakes contain more than just healthy ingredients. “You may be getting more sugar than any of the other ingredients,” says Stacey Nelson, a dietitian from Harvard-affiliated Massachusetts General Hospital. “But if you can’t eat and that’s the only food that’s palatable, it’s better to get the calories.” Dr. Salamon agrees. “In that case, substituting one meal a day with a drink won’t hurt.” Both experts warn that people who can still eat may be risking too many extra calories by consuming the drinks. That can lead to weight gain and a list of complications associated with obesity, such as high blood pressure and diabetes.

Equally concerning is that nutrition in a can isn't the same as nutrition from food. "Even if they're fortified, they still won't contain all of the nutrients a whole food source would," says Nelson. Dr. Salamon questions the types of vitamins and dietary supplements in the drinks. For example, some include selenium. "It's not proved that we need selenium," she says."

Wait...we're talking about the same formulas and supplement drinks millions of Americans on feeding tubes are using as their primary source of nutrition, right? So, how is it we're cautioning people to limit their use of these products because of the risk of obesity and diabetes while sending new feeding tube patients away with cases of the same formulas as their primary source of nutrition?

The saving grace, if there is one, is this article dates back to 2013, before (at least I was aware of) any widespread discussion of this topic in the ALS community.

Yet, the question remains: Why are feeding artificial, sugar laden formulas to the sick, frail and elderly? The cynic (and business person) in me says "Follow the money!". And that default thinking may be correct. The financial website Research and Markets on May 11th of this year issued a report titled "Clinical Nutrition Products - Global Strategic Business Report 2015: Rising Incidence of Chronic Diseases to Kindle Markets".**  Like the Morgan Stanley report in my last article, this points to a global investment opportunity in, among other areas, enteral nutrition.

What incentive is there for a Nestlé or an Abbott (and I pick on them because they are market leaders) to provide "food as medicine"? The formulas they make are cheap, high margin products. , organic, non-GMO whole food formulas, like Liquid Hope, require a more thoughtful, compassionate and patient centered approach. An approach, much like the Green House model we will use in our ALS/MS Residence that places the patient first.

Let's hope that families, advocates, patients and the handful of clinicians who have already recognized the importance of nutrition for healing, will initiate a grass roots effort to educate Doctors, Nurses, Nutritionists, Dietitians and even Legislators. To demand choice. To demand information. To demand sustenance for the weakest among us.

But people need to care. People need to do the tough work of educating themselves, of questioning your Doctor. The uncomfortable work of saying "No. There's a better way."

Do the work. Reap the reward.



*Harvard Publications Article: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype

**Research and Markets: https://globenewswire.com/news-release/2015/03/11/714246/0/en/Clinical-Nutrition-Products-Global-Strategic-Business-Report-2015-Rising-Incidence-of-Chronic-Diseases-to-Kindle-Market-Growth.html?print=1

Nutrition and ALS: What's IN the Calories Count

In my pre-ALS life I ate well. Not always healthy, but well. I love a good cheese steak. New York pizza is the best (sorry Chicago, but your hot dogs rock!). There's an incredible steak and seafood restaurant in King of Prussia, PA that I used to visit on every trip. And I'd walk barefoot on broken glass for a good cheeseburger and a chocolate shake. 

When I was home, I loved to cook. And I always tried to cook healthy. Cooking Light magazine was always on the countertop (ask Linda about the microwave chocolate pudding recipe). Crab cakes, Filet Mignon, Smoked BBQ Ribs, broiled Haddock,  massive Saturday breakfast omelettes, beef stew and chili. I loved cooking.

In my post-ALS world, based on discussions with my ALS clinic team, I focused on fat and plumping up. Mass General had done a study that showed patients with ALS survived longer if they kept or even increased their weight. So, the double cheeseburger became (and remains) my best friend. 

It wasn't until I got my feeding tube in January of 2014 that we came to the realization that what goes in your pie hole (or MIC-KEY button) matters. For regular readers of this blog I'll spare you from repeating the story. The bottom line is, we discovered the formula I had been prescribed was junk. Corn syrup, non-organic soy milk, more forms of sugars to serve as a cheap source of carbohydrates and man made vitamins. Sugar isn't good for you...and it's everywhere.

I'm by no means a card carrying vegan but, for those who don't believe me consider this:

Start with some basic metric conversion. 4 grams equals 1 teaspoon of granulated sugar. There are 13 grams of sugar in an 8 ounce cup of low fat milk. So that glass of milk you just served your 8 year old had the equivalent of 3.25 teaspoons of sugar in it. And no one is saying you shouldn't drink milk.

It gets better. Applesauce is good, right? A small serving cup of Mott's applesauce contains 23 grams of sugar. That's 5.75 teaspoons of sugar. Kellogg’s Smart Start Strong Heart, Toasted Oat sounds healthy. A 1 1/4 cup serving (and who eats that little?) has 17 grams of sugar sugar or 4.25 teaspoons (and that's if you don't reach for the sugar bowl). I know! Yogurt! It comes in small containers and is definitely healthy. Let's look at a 6 ounce container of Yoplait Thick & Creamy Yogurt, Strawberry. Hmm...28 grams of sugar. Teaspoon equivalent: 7 teaspoons.*

Let's go get a burger. 2.5 teaspoons of sugar in a Quarter Pounder with cheese. 19.25 in your chocolate shake (no surprise). The good news is there's no sugar in the fries, so supersize it!**

Yes folks, sugar is everywhere. Obesity and diabetes are on the rise. Think I'm just a nut? Check out this article from Bloomberg titled "Here’s how much sugar consumption is hurting the global economy", about a recent report from Morgan Stanley analysts. An excerpt:

"Sugar may not be so sweet when it comes to the effects on the world economy.

That’s the conclusion of Morgan Stanley analysts in a new research report. They say that because health is a key driver of economic growth, rising diabetes and obesity rates cloud the outlook in both emerging markets and developed economies. Sugar consumption is one major culprit behind such health problems — making it a liability for global output. "

Morgan Stanley doesn't have an environmental left wing whacko agenda. They're money guys. Their analysts, and I've met some, do deep research before they publish a report.  If they are recognizing there's a sugar related health problem, it's real.

The science is in folks. Sugar is a time bomb we all ingest in delicious, bite sized morsels manufactured by a food industry who knows our inner most gastronomic desires. They spend millions on product research to put the right amount of sugar in processed foods so we crave more. They call it "the bliss point".

Which brings us back full circle to ALS and the millions of people around the world who get their nutrition via feeding tubes. It's become accepted as fact that the formulas which Nestlé, Abbott and others make with cheap ingredients for incredibly high profit margins is a substitute for real food.

And why not? Their marketing machines have convinced clinicians across all disciplines that it a viable substitute. For institutional use it has a long shelf life. It's easy to administer for front line staff.

But is it the right thing to do, especially for our sick and elderly? Linda says, and she's correct, if she called our doctor and said she was going to start feeding me Karo syrup, soy milk, cane sugar and liquid children's vitamins he would call social services.

Patients need three things when it comes to enteral nutrition:
-  They need education on nutrition. Before we did our research, we were blissfully ignorant.

-  They need full disclosure of what is in their new source of nutrition.

-  They need choice. There are options available from blenderizing your own meals at home to prepared, organic whole foods formulas like Liquid Hope.

For ALS patients, nutrition matters. Please do your homework.

*Source: WebMD http://www.webmd.com/food-recipes/sugar-shockers-foods-surprisingly-high-in-sugar?page=1

**Source: McDonalds website http://www.mcdonalds.com/us/en/food.html

Full Bloomberg story: http://www.moneyweb.co.za/news/international/heres-how-much-sugar-consumption-is-hurting-the-global-economy/

Perspective: An Observation

"Tragedy is when I cut my finger. Comedy is when you walk into an open sewer and die." - Mel Brooks

Having ALS certainly doesn't give me a corner on perspective. But, over the seven plus years since my diagnosis, I've met many people who have been told they were going to die. Some are still here, others have, in fact, passed on. I can guarantee you that for each of them, a "terminal" diagnosis was a perspective changing event.

How receiving that news changes one's perspective varies by individual. Nature, nurture, life experience, training, personality, faith (or lack of), religion (different than faith), social status, etc., all play a role in shaping our individual perspective. Some people become more resilient, some crumble. Some accept the news with grace, go about getting their affairs in order, some begin bull riding, cliff diving and savoring life. Still others just take each day as it comes. 

Social media has become a wonderful platform for an increasingly self indulgent world. Sure, it can keep friends and relatives separated by distance more connected. Just this morning I sent a birthday greeting to my Cousin in Indiana. However, more and more often, social media has become a platform for the emotionally needy to whine. There. I said it. Get a grip, folks. More accurately, get some perspective.

We're whining about the snow, the cold weather, our kids, our spouse, our best friend, our job, the President and how tired we are. Meanwhile, in the Middle East, a 6 year old girl is having her head cut off by a stranger, there are people in Africa dying of HIV and there's a homeless guy in New York City who would take your "crappy" job in a heartbeat. There are people in North Korea picking thru garbage dumps for food because their "President" isn't held accountable to anyone. There's a 10 year old girl who has been sold into the sex trade somewhere.

When I see social media whiners, it makes me sad - because it usually comes from good people. People who are better than what they are Tweeting, positing or Instagramming. Social media has made it far too easy to thoughtlessly tap out our emotions on our phones and hit "Send". I can't help but believe how often we'd post differently if there was an hour delay before our posts went through, followed by a display of what we wrote with an "Are you sure you want to post this?" pop up.

What a world we could make if, for every selfie, for every whining post about what previous generations simply considered to be the trivialities of life, we substituted a genuine act of kindness for others. If we focused on others instead of ourselves. 

Everyone's entitled to a bad day. No question about it. But do we really need to share every little bump in the road with the world? Norman Vincent Peale said: "The more you lose yourself in something bigger than yourself, the more energy you will have." I don't now about you, but I can always use more energy. The question is, how do we choose to spend it? Whining, or lifting someone else up?

I joked with our visiting nurse last week that I was going to have bumper stickers made that read: "Perspective - Get Some". I think I really will.

Now, go surprise somebody with an act of random, unexpected kindness. Guaranteed, you won't feel like complaining after.

ALS: No a Time for Fear or Small Thinking

     

We just finished our first Board Meeting of the year for the foundation. It was a bit overdue. We had so much to discuss that we sometimes strayed off topic and didn't really cover everything we should. We all agreed a second meeting in the next few weeks is due. Sitting here with some music playing, it occurred that one thing was clear: this is a passionate group of people.

In my work life, I insisted on two things above all else: passion and commitment. Those two traits trump knowledge, money or even talent. Passion and commitment are the crucible in which big dreams come to life.

I speak of big dreams because there are those who say (and more often it's unspoken, but no less palpable) that our vision to build a world class ALS/MS Residence is impossible. I call that "small thinking". 

Big thinking was never discussed in the house where I grew up. It went unsaid that, if you want to do something, just do it (I think Nike stole that from my Dad). The parallel topic that was discussed was the value of hard work to achieve your goal. "Nothing worth having comes easy." was a phrase I heard more than once. Dad would have loved the New England Patriots them of "Do Your Job" this year. I can honestly say I was never discouraged from doing anything. My parents weren't afraid to let me fail. My folks struck the perfect balance between being supportive and letting us learn the lessons of failure.

Families with ALS know this as soon as they hear the diagnosis fall from their physician's mouth. Fear isn't an option, and neither is small thinking. That's not to say the fear isn't real, you you either give in to it or you saddle up for the fight of your life - literally.

Two comrades in arms were in the hospital recently, fighting through tough different battles against our common enemy. Steve Gleason and Pete Frates, without question two of the highest visibility and most effective advocates in the ALS community today, have both demonstrated passion and commitment from the day of their diagnosis. Some might say it's because they were both high performance athletes but we know people fighting ALS who have never stepped foot on a field of play.

What binds the ALS community together is passion and commitment. There's a perspective and a focus shift that happens when a family hears "Dad has ALS, and we have no cure". At that moment, whether they realize it or not, they've become part of a larger family. At that moment, they become fearful, or fearless. At that moment, their world changes - forever.

It's no coincidence that the vast majority of fund raising for A!S is done by family and friends of the afflicted. And in the case of Pete Frates, Steve Gleason, Augie Nieto and countless others, the afflicted themselves. They share a passion that no families should be forced to endure this disease.

At our Board Meeting, we discussed the need for passion and commitment on our team. There are many smart, experienced people we could ask to be on the Board. But it only works if they have a real connection to ALS or MS or otherwise stared death in the face. If they've experienced that perspective shift. 

So...we're always on the hunt for passionate people. Our Advisory Panel,has been very helpful as have some unofficial advisors we know through the amazing ALS Facebook community. They all share the passion and commitment to help us achieve our goal. 

Fear? Not an option for us. Small thinking? No thank you. We dream big around here. We live in a world where miracles happen and dreams come true.

Want to help us too? Drop us a line at: info@hope-JG.org.

Donate at: http://hope-JG.org

Passion, Cooking and Perspective

We watched the movie "Chef" last night on Netflix. We laughed, we cried and we went wild over the food. Without a doubt, the best film I've seen in a long time.

It made me realize how much ALS has stolen that we've had to find "work arounds" for. Like cooking. I did virtually all the cooking in our house. It was a form of relaxation for me. I would come home, duck my head in the fridge and cupboards (if I hadn't stopped at the store to buy food with a menu in mind) and whip up whatever struck my fancy. The fall back was always Paśta Puttanesca (Hooker's Paśta, a dish the Italian ladies of the evening would make for American GI's from easily available ingredients). Linguine, Callamatta olives, fresh garlic, onions or shallots, basil, capers, fresh plum tomatoes and whatever else we might have around like roasted red peppers. Everything is chopped up and goes in a big sautée pan with EVO. Tomatoes and little white wine go in last to make it a bit "saucy". Some freshly ground pepper, organo, thyme and the cooked linguine gets tossed in. A loaf of fresh Italian bread from Botto's bakery to soak up the sauce, a bottle of wine and freshly grated Parmesan or Romano cheese and you're done. Total time about 30 minutes. 

Linda's Facebook post last night struck me, not only at how much ALS has taken, but how God has replaced everything with an appreciation of the little things I used to do without thinking - like looking in a mirror. I miss the smell of fresh cut grass I would clean from under the deck of the mower. The feel of icy stream water rushing past the legs of my fly fishing waders. And yes, even the smell of trash as I'd bundle it up and carried it the 150 feet up our driveway to the roadside.

Fly fishing, hiking, camping, cooking (at home and over an open fire), golfing, coaching kids and my work were all passions. ALS has stolen those but it's made me rediscover how head over heels in love I am with my wife, how gracious our God is and the importance of giving back no matter what your circumstances.

Much like main character in "Chef", Linda and I have had to discard some things we once thought important and we've reinvented our relationship and the way we live life. We've discovered that nothing is permanent in this life. But that's not a bad thing. Smell the roses, kiss the one you love (while you can still pucker - I can't:/) and savor each moment as if it won't come again. Bon appetite.

Whatever condition we are in...

“Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it's the worst possible condition, because, if it is, we're finished anyway, whether we go on the journey or not, and it's better to die having made the journey we're been longing for than to be stifled by our longing.”
― Thomas Bernhard, Concrete

We've lost several members of the ALS Community over the past few weeks. Some went out fighting. Others simply said "Enough." Very personal choices which deserve to be honored and should never be judged.

It's commonly said that "Life is a journey". I respectfully disagree. Life is only a journey if you live it. And you you can live life even if you're "terminally" ill. I would argue that many of the people I know who are taking the most prolific  journeys - literal, spiritual, artistic or otherwise - are individuals whom Doctors have told, "There's nothing we can do."

Steve Gleason is an amazing example of an individual who hasn't let ALS define him. Steve has been to football games with his old Saint's team mates flown to Peru to climb Machu Pichu (with a little help from his friends), been to Microsoft to inspire and press their innovation teams to improve communication hardware/software for the disabled. He's even attended the most recent State of the Union address. Steve Gleason is living his motto "No White Flags". 

The Hope-JG Foundation is rooted on the premise that every family with ALS matters. We know technology can make a world of difference for people with neurodegenerative disease. As our friend Steve Saling says, "Until there is a cure, technology is the cure." 

Technology can enable a paralyzed person to paint, create website or make a movie. It can enable a speech impaired person to make phone call, communicate with their Doctors and tell someone "I love you." Technology makes it possible for the disabled to take journeys like anyone else (albeit with a little extra effort).

Won't you join us? We intend to see an ALS/MS Residence built in Maine. It will have state of the art technology to provide the residents with an  unparalleled level of independence. The Residence will provide organic, whole food nutrition for those who can eat by mouth and those on feeding tubes. It will be cleaned with non-toxic cleaning agents. 

No matter what journey families with ALS are on, we will be there to support them. 

To donate go to: http://www.hope-jg.org/#!donate/c1ghi

To find out about the ALS Residence Initiative go to: http://www.alsri.org

What's In a Name? - Liquid Hope

After ten months of being on a feeding tube and taking in the prescribed corn syrup based, semi-synthetic formula, we finally received approval from my Medicare Advantage provider to switch to Liquid Hope. According to its manufacturer, Functional Formularies Liquid Hope is: "... is a FDA Approved nutritionally complete, organic, real food, whole foods enteral formula and oral meal replacement."

While there's some obvious irony with the name, for Linda and me finding Liquid Hope was more than just a blessing for us. Finding Liquid Hope was finding another group of dedicated, passionate people who know the status quo for ALS families and so many others cannot stand. 

That's why we are ecstatic to announce that we are adding Functional Formularies/Liquid Hope to our fine group of Innovators. 

For us, it's not what's in Liquid Hope, like organic chick peas, garbanzo beans, turmeric, sweet potato, garlic, kale, peas, carrots and broccoli and other good-for-you, yummy stuff all mixed with
dose of love and compassion. It's what's missing. Things like: MALTODEXTRIN, HIGH FRUCTOSE CORN SYRUP, SUGAR, CALCIUM CASEINATE, SOYBEAN OIL, POTASSIUM CITRATE, SOY FIBER, PARTIALLY HYDROLYZED GUAR GUM, MAGNESIUM CHLORIDE, CALCIUM PHOSPHATE, HYDROXYLATED SOY LECITHIN, SODIUM ASCORBATE, CHOLINE CHLORIDE, SALT, SODIUM CITRATE AND MAGNESIUM PHOSPHATE. Liquid Hope is also soy, gluten, dairy and corn free. It has no Genetically Modified Organisms (GMO's) AND it comes in BPA free packaging!

Robin Gentry McGee, the founder and CEO of Functional Formularies, asked a question we should ask when it comes to our healthcare: Is there a better way? Medical practitioners and hospital Nutritionists and Dietitians need to re-examine (and maybe do some soul searching) on the issue of which enteral formulas they prescribe for their patients. Is a "semi-synthetic" formula, loaded with cheap carbs, sugars, artificial vitamins and preservatives good for anybody? Before Liquid Hope, there were literally no alternative. Now there is one, and it's Medicare approved, so there's no excuse.

Yup. As word spreads about Liquid Hope, the status quo is being shaken. There's a paradigm shift in how patients and their families are thinking about what is going in the tube. Patients with cancer, ALS, neonatal and pediatric patients and otherwise immune compromised patients need real food to fight their battles. No more should any patient accept the term "maintenance" regarding their care. Every person fighting an affliction deserves the chance to thrive. That's the theory behind the ALS/MS Residence we intend to build in Maine. That's the hope offered by our latest Innovator, Functional Formularies.

For more information:: http://www.hope-jg.org/#!innovators/c23ff