Thursday, July 31, 2014

Got Our First Hope Photo For The Gallery!

Carl, Kate and Cindy Sending Hope From CT!

Thank you to Kate Carr and Carl and Cindy Dilllon Brightman for sending the first Hope Photo for our online Hope Gallery since we launched the Honor Someone You Know campaign. Thank you!

We want very much to be sure no one believes our foundation's efforts are about us. There are at least 5,000 new families who join the ALS community each year - and at least that many we lose. It's not a cure. It doesn't push research forward. But it does show people with neurodegenerative disease that they aren't alone and there's always Hope.

Go to the Gallery to see our photos.!hope-photos/cvte If you'd like to add to the gallery from wherever you are, follow the link that says "Click Here" for instructions. You can even download and print a Hope sign. Join the Hope Movement!

Tuesday, July 29, 2014

Team Gleason Knows It's About Innovation - And Inspires It

Congratulations to Steve Gleason for, once again, inspiring innovation. This time, the former NFL player asked "hack" teams at Microsoft for the ability to turn off and on the Surface Pro 3 tablet he uses. Here's an article about it:

We know innovation makes a difference in the lives of the disabled. Steve knows it. Ivo Vieira knows it. Rupal Patel, John Costello and Steve Saling know it too. 

It's a simple formula: Innovation + Passion = Nothing's Impossible


Monday, July 28, 2014

Time for Diplomacy is Running Out: CMS is Wrong

We posted an article not long ago titled "Advocacy: Do New Medicare Rules Violate The ADA?". To date, it's our most popular article and most retweeted one. Our friend and comrade in arms, Steve Gleason posted a similar article on the Team Gleason website recently. In his post, Steve said: "My advisors don’t want me to put it this bluntly, but it needs to be said. People, who want to be productive, are being denied basic human rights, and Medicare is most likely violating the Americans with Disabilities Act...".

Steve is correct - tactically and morally. The Hope-JG Foundation, along with groups like Team Gleason and hundreds of other individual advocates, continue to work within the legislative system with Congress. We will continue that effort but it requires the kind of political balancing act and diplomatic parsing of language that people with ALS, who have a relentlessly progressive disease, cannot afford. At some point, someone needs to stand in front of the bureaucrats at CMS and shout "ENOUGH!"

As early as 2010, the Department of Justice, in an Advanced Rulemaking document titled "Nondiscrimination on the Basis of Disability in State and Local Government Services; Accessibility of Next Generation 9-1-1", acknowledged in detail the increased use of Internet Protocol (IP) based tools such as email, text, and even video conferencing (like Skype and FaceTime). The DOJ's acknowledgement of the use of these now ubiquitous modes of communication should be a big deal to anyone concerned about CMS' current archaic, arbitrary and cruel position on the use and coverage of SGD's. The DOJ oversees the Americans with Disabilities Act (ADA). As the enforcement body responsible for the ADA, we feel they should be involved in this discussion and should be reviewing CMS' standing rules.

With all due respect, PALS don't have time to wait for the legislative wheels to churn. People with ALS are literally in their last months of life and, if CMS' current position holds, those individuals won't be able to send an email to a son or daughter far away. They won't be able to write a letter to their Congressional reps. They won't be able to say goodbye to anyone who isn't in earshot. All because...well, we don't know because CMS won't give a specific rationale.

NOTE: We are NOT asking CMS or the American taxpayer to pay for internet access or additional functionality. The irony of the new rules is that they never did. "Unlocking" devices has always been a transaction between the SGD vendor and patient.

Yup...the time for diplomatic talk is over. Time to make some noise.

You can call or write your Congressional reps and make some noise about this:

Read the latest CMS Rulemaking document:

Read the 2010 DOJ document which clearly recognizes the increased use of IP based tools for communication:

Thursday, July 24, 2014

Medicare Is Making People Speechless: A Speech Language Pathologists Perspective

Thanks to our friend, Michele Dupree, for posting this article on. Facebook. It's a concise description of how Medicare 's recent decisions regarding Speech Generating Devices (SGD's) are making speech impaired individuals virtually voiceless by restricting access to technology. Technology "normal" people use every day to remain socially connected and productive.

We believe Medicare's bureaucracy is out of touch and discriminating against speech impaired people. Read this article and let us know what you think.

Tuesday, July 22, 2014

It Bears Repeating: It's Not About Us

We were blessed to be around many people this weekend. Had a lot of fun and fresh air. But it happened again. Quite innocently and with the best of intentions, more than one person asked about the foundation in a manner that made it clear most thought we were benefitting from the activity of the past few weeks.

Let me state again, for the record, that my family does not benefit financially from The Hope-JG Foundation in any way. In fact, our Articles of Incorporation state that we can't - and that was at our request. This effort isn't about us, it's about the thousand of other families fighting the same battle. We are one big "family by circumstance".

I love this quote from Fred (Mister) Rogers. It exemplifies the American spirit around disasters. We saw it with 9/11, we've seen it with tornados, floods and hurricanes. We've seen Americans respond both here and abroad to help others. The ALS "disaster" isn't one that makes the news often, save for the occasional inspirational story of an afflicted family. It's not one which takes hundreds of lives in a day. ALS is insidious. It's in many ways a hidden killer. 

Think about that when you read this quote, and think of how you can become a "helper". If a tornado hit your town, would you be one of the people digging through rubble, making coffee and sandwiches for rescue workers? Would you be a "helper"? Help us to make the lives of families with ALS and other neuromuscular diseases more rich and full. It's possible. All we need are hands, hearts and voices.

“When I was a boy and I would see scary things in the news, my mother would say to me, 'Look for the helpers. You will always find people who are helping.' To this day, especially in times of 'disaster,' I remember my mother's words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.” 
― Fred Rogers

Innovative Technologies Enhance Lives

Our foundation is determined to build an ALS/MS Residence in Maine. We also know that technological innovation will be the heartbeat of the residence.

Imagine an person getting up,from their wheelchair to take a walk in the garden outside.

Saturday, July 19, 2014

A Good Overview of an ALS/MS Residence and Why Maine Needs One

Not long ago, I posted in this blog this statement: "Our foundation's primary mission is to build an ALS/MS Residence in Maine.". The challenge is that not many people know exactly what that means. It's a challenge only awareness and education will overcome. To that end, this is a great article from MDA/ALS News Magazine. It does a wonderful job of painting the picture of why this type of facility is different from traditional nursing home environments and why that's so needed for the unique (and younger) ALS/MS population.

Please visit our website and raise your hand if your heart says "Help them."!projects/c21kz
(Watch the videos at page bottom.)

Friday, July 18, 2014

Thankful, Rested And Looking Ahead With Anticipation

I took a brief hiatus from posting here after an intense couple of weeks pushing for the (successful) lusovu/Eyespeak Kickstarter campaign. Many thanks to the over 600 people who donated and to the hundreds who Tweeted, posted, emailed and called on their behalf.

Linda and I have spent the last couple of days outside at the lake and ocean. Nothing like water, Maine air and sunshine to clear the cobwebs and refresh the soul.

So...where do we go from here? We have our two other Innovators to support. Rupal Patel's VocaliD and John Costello both have different needs but complimentary services. We'll see what we can do. For more about them, go to:!innovators/c23ff

Next, we're still in need of volunteers. People with experience in event planning and an accountant willing to offer some Pro Bono guidance are needs as I write this, but anyone willing to roll up their sleeves will be welcome with open arms.

Linda and I know the foundation is on the proper course and we're trying not to be impatient. After all, we just launched on May 6th. Still, we are ever cognizant of the days that pass - hard not to do when you have a "terminal" disease. Our hearts are set on getting an ALS/MS Residence built in Maine while our minds are conscious of the enormity of the task.

Regardless of where this new adventure may take us, we are humbled by those who have joined us, thankful for those who will and mindful of the thousands of families battling neurodegenerative diseases of every kind.

If YOU have an idea for fund raising, assistance, networking relevant to our mission (see:!about_us/csgz) or want to volunteer, email us at:


Monday, July 14, 2014

Difficult But Effective Advice: There Are Things You Can't Change - So Relax

“As you look back on your life, you will often realize that many of the times you thought you were being rejected from something good, you were in fact being redirected to something better. You can’t control everything. Sometimes you just need to relax and have faith things will work out. Let go and just let life happen the way it’s supposed to. Sometimes the outcomes you can’t change end up changing you and helping you grow mentally, emotionally or spiritually.

When things fall apart, consider the possibility that life knocked them down for a reason. It was not to punish you, but to prompt you to build something better to fit your personality and your purpose. Sometimes things fall apart so better things can fall together.”
― The Angel Affect.

Friday, July 11, 2014

Wealth, ALS Awareness, Reality and Hope

I read a blog piece yesterday that caused several visceral reactions - and it also caused me to think. 

The author's premise was that the face of ALS awareness is commonly associated with individuals like O J Brigance, Steve Gleason, Augie Nieto and Mike Porcaro. All of whom have net worth above the norm and who have started organizations to raise funds and awareness for the disease and for research. The author makes the case that, because these individuals are wealthy, they put a false face on the "normal" life of an ALS patient and the ability to remain active. He then goes on to list in stark and accurate detail, what happens in his and thousands of other ALS patients lives every day.

As a sidebar, let me emphasize that I have no issue with the author or the blog article. It's a well written and thoughtful piece. It just comes from a place of desiring to point out the harsh reality of living and dying with ALS. A much needed and often overlooked perspective that unaffected people turn their eyes away from. ALS isn't pretty.

The individuals named above may use their wealth to enhance their own lives - ALS is an expensive disease, especially if you are a slow progressor like me. But these guys have also used their wealth and celebrity to help others. 

The author also makes a statement, and I have the utmost respect for this most personal decision, that he doesn't "want to be hooked up to a machine merely to survive.". He's referring to being "trached" or "vented" after breathing on his own becomes impossible.

And that, I guess, is where my visceral reaction came from. Linda and I started The Hope-JG Foundation on a shoestring. We aren't wealthy nor do we have the kind of celebrity that comes from playing in the NFL, being a self made millionaire or a rock star. We're just a family with ALS who chooses to hold on to Hope. Hope that we can make a difference in the lives of others. Hope that staying engaged and active will be a distraction from the list of daily struggles every ALS family faces - including ours.

But it's not just Hope. We are secure in our knowledge of facts we've discovered over the past seven years. Fact: Technology can make a huge difference in the lives of the disabled. Fact: Hope isn't a Hallmark card catch phrase. It's a tangible, very real anchor to hold onto, if you believe it. The "dark side" of ALS the author refers to IS reality. But it's a reality the light of Hope can penetrate. It doesn't make the tough stuff easier. It certainly makes it more bearable.

The ALS,Residence concept,isn't just wishful thinking. It's a proven model for living with ALS, MS and other neurodegenerative diseases with Hope, dignity and a level of social connection far beyond what the traditional nursing home model can offer.

For us, it's not about celebrity or fame. It's about doing what is right because no one else is doing anything. Join us in bringing an ALS/MS Residence to Maine.!projects/c21kz

Thursday, July 10, 2014

Trials Don't Last Forever

“Life has moments that feel as if the sun has blackened to tar and the entire world turned to ice.  It feels as if Hades and his vile demons have risen from the depths of Tartarus solely for the purpose of banding to personally torture you, and that their genuine intent of mental, emotional, and spiritual anguish is tearing you to shreds.  Your heart weighs as heavily as leaden legs which you would drag yourself forward with if not for the quicksand that pulls you down inch by inch, paralyzing your will and threatening oblivion.  And all the while fire and brimstone pour from the sky, pelting only you. Truly, that is what it feels like. But that feeling is a trial that won't last forever.  Never give up.”
― Richelle E. GoodrichSmile Anyway: Quotes, Verse, & Grumblings for Every Day of the Year

Wednesday, July 9, 2014

The Tapestry of Our Lives

Note: This is a rerun of a Facebook post from 2012. I feel compelled to post it here because it happened again - people we met, by pure "chance" stepped back into our lives in a big way. I guess this is always relevant.

I don't know why but lately I've been having incredibly detailed dreams of my childhood and teenage years. They're more like snippets really, the feel of yanking an ice cold bottle of Casco soda from the rack of a soda machine. The sound of the sunrise cannon at the yacht club on a hot July morning while fishing from the Town Landing dock. Playing basketball outside on a sunny March day with cold, wet hands. The smell and taste of Spruce Gum. And the people like Tom Randall, the owner of Town Landing Market and the first true entrepreneur I ever met. Or Ted Jordan, the Head Groundskeeper at the Payson estate who I worked under for two summers. After waking from yet another night of dreams like this I chuckled to myself that, when we hear "my life flashed before my eyes", it usually doesn't happen over weeks and months. I guess God's giving me the "long play" version. 

It occurred to me this morning that every experience and person God places before us is like a thread in the tapestry that will become our life. If you've ever seen an old tapestry from the back, it's a mess of colored threads and knots. It's only when you look at the front, often from a distance, that the beauty of the artist's work can be seen. My friends, we often see our lives like the back of a tapestry, a mess of colors, loose threads and knots. But God sees our lives as what He's created, a beautiful tapestry made up of threads of memories and people which, over time, may not seem to be connected but, when woven together by an artist, become a thing of beauty. Appreciate your past, breathe in your present, anticipate your future - your tapestry isn't finished yet. 

Tuesday, July 8, 2014

"Sometimes Life Is About Being Sad and Doing Things Anyway"

“The world isn’t perfect, and some days it wears you down. You can either accept that, and face it, and be a help to others instead of a hindrance. Or you can decide the rules are too tough and they shouldn’t apply to you, and you can ignore them and make things harder for everybody else. Sometimes life is about being sad and doing things anyway. Sometimes it’s about being hurt and doing things anyway. The point isn’t perfection. The point is doing it anyway.”
― Chloe Neill, Biting Cold

Monday, July 7, 2014

Sunday, July 6, 2014

Calvin On Hope

.“We should ask God to increase our hope when it is small, awaken it when it is dormant, confirm it when it is wavering, strengthen it when it is weak, and raise it up when it is overthrown.” ― John Calvin

Saturday, July 5, 2014

Anatomy of Isolation: THIS Is Why We Want An ALS Residence In Maine

Tony Judt was a Professor at NYU, a gifted writer a chronicler of history. Tony died in 2010, but left behind a wealth of writings which share his personal experience with ALS.

This article speaks to the frustration and isolation he felt at night. As he points out, one thing that makes ALS different from the rest of neurological disorders is a blessing and a curse: the mind remains totally aware as the body deteriorates.

Linda and I were discussing isolation just yesterday. As families were gathering to celebrate the 4th (in between rain showers), we were here, alone and watching TV. Please understand this isn't a complaint. It's merely the reality of the disease. If we want to do something that was previously spontaneous, it now takes planning and time. We move so slowly and I require so much accommodation, that it causes people to balk at including us in many activities. Understandable.

What Tony discusses in this article was his truth at the time. I'll resist further pontificating and let the article speak for itself. Please read it and really think about how you could help us build a facility that would prevent social isolation and mitigate the effects of a night such as Tony describes.

Friday, July 4, 2014

What Makes America Great: Reason #1776

“America is the greatest engine of innovation that has ever existed, and it can't be duplicated anytime soon, because it is the product of a multitude of factors: extreme freedom of thought, an emphasis on independent thinking, a steady immigration of new minds, a risk-taking culture with no stigma attached to trying and failing, a noncorrupt bureaucracy, and financial markets and a venture capital system that are unrivaled at taking new ideas and turning them into global products.”
― Thomas L. Friedman

Panic and Fear

A winning effort begins with preparation.” - Joe Gibbs

I grew up as a “locker room brat”. My first memories of my Dad coaching are of him hitting fly balls after High School practice had ended to kids on his baseball team who wanted the extra work. At the age of 4, sitting on a canvas equipment bag and peering through the chain link backstop, I might as well have been at Fenway Park watching Ted Williams hit a Home Run over the bullpen in right. Dad coached basketball too. I became official team mascot early on and some of the JV cheerleaders were given charge of keeping me entertained during the games. I wasn’t so enamored of basketball at that age but I LOVED the attention of the girls!

Over the course of his 30 year career, Dad coached boys and girls Varsity and JV sports including Track & Field and served as Athletic Director in the final years before he retired. He was the kind of guy who would pretty much take on whatever job needed to be filled because he just loved coaching but basketball was his true love.

Dad was a proponent of the theory that smarts and teamwork would trump talent and the consistent success of his teams pretty much proved that to be true. I remember watching him put his teams through what he called Panic Drills. These were game situation drills complete with game clock timing that were designed to “de-sensitize” the players to the stress they’d experience in a competitive game. He’d watch intently from the sidelines, peering over the top of his glasses with whistle poised to signal that time had run out. “Do it again!” he’d shout and the players would take their assigned positions and repeat the drill until Dad was satisfied that everyone knew every possible offensive move and the proper defensive reaction. Years later, I met one his players at a local shopping mall. She said that she had carried the lessons learned from Dad’s coaching techniques, particularly the Panic Drill, into every facet of her life. In fact, she was now coaching and the one thing she tried to impress on her players was exactly what Dad had always said: “Panic comes from fear. Fear comes from not knowing what to expect. The team that is best prepared controls the game.”

I’m not proposing that any of us can be prepared for every challenge life will present. A basketball game, because it has rules and a time limit, is not a parallel to the broader uncertainties of life. However, if you build a strong foundation of faith and are confident in your relationship with God, you’ll find you’re much more resilient when it comes to any adversity. The Bible, as my wife says, is an instruction manual for life. Knowing His word, and the promises He’s made to us all, is the best preparation any of us can have for life’s trials. Possessing confidence borne from faith is anyone’s best preparation to face adversity.

What I’ve Learned: When life throws something at you that you’re not expecting, take a deep breath and be still for a moment or two. There are very few events that can occur for which there is no solution. If you’ve done everything that YOU can do, it’s time to step back and let God do the rest. He always keeps His promises.

“This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”– Joshua 1:9

Wednesday, July 2, 2014

Why I Love My Co-Founder

Why I Love My Co-Founder

Saturday was a day I've seen repeated many times over the past seven years. 

It bagan, as most days, with Linda waking before me at about 6:30 - early for a Saturday because we had to be in downtown Portland for the 2nd annual planting of the ALS Healing Garden in Lincoln Park. Once out of the shower she prepared my tube feeding and plugged me in. Then the animals need attention and feeding. Hope, our ebullient pup, goes in and out several times each morning, requesting the door with a distinctive "woof", always as Linda is putting her first sip of cooling coffee to her lips.

Then her attention flips back to me for toothbrushing (always an adventure with these hands) and getting me dressed (kinda like dressing a weeble). All this mind you, while trying to get herself ready. Uninterrupted, the process of getting ready in the morning is about 90 minutes minimum.

We hit the road and make a Starbucks stop because Linda never did get that first sip of coffee. Arriving at Lincoln Park, we find a small group of people on their knees busily planting red and white flowers. Many of them we know or met at last year's planting. Linda pitches in to help, with one eye on Hope and me because Hope LOVES people and was straining against her harness to slobber over them all. We met a little boy named Isaiah who played with Hope for a bit. Linda came back and had a wonderful conversation with him. He pointed out his Dad, who was part of a quartet playing worship music (I KNOW! In a public park!:)).

For those who don't know, Lincoln Park is frequently Home Base for Portland's homeless. Saturday, we met Joy, who made a valiant effort at singing a worship song. She appeared a bit shaky, but was friendly and enjoying the atmosphere of worship and fellowship. She was with a man who was drunk. A Pastor of an in town church had spoken with him earlier. The man had just gotten out of jail, had been sober for 10 years and had started drinking again that morning. Both Joy and her companion received prayer.

We were among the last to leave and Linda, in her typical disarming manor, went to say goodbye to Joy. They chatted for about 10 minutes, Joy petted Hope a bit, and they parted with a mutual "God bless." I watched them talking and just marveled at how Linda put Joy at ease and how she treated her like anyone else. No judgment. No condemnation. No pity. She's at her best in those situations.

By this time it was mid-afternoon so we grabbed some sandwiches and went to our favorite spot overlooking Willard Beach. Between trying to eat and tending to Hope. Linda really didn't relax. We cut our visit short because Linda had to get to the annual Relay for Life held at the High School up the road. Our daughter-in-law, Hannah, lost her Mom to pancreatic cancer a few years ago and has sponsored a team at this event for the last few years. 

So, Linda drops me off at the house, hooks me up to another tube feeding, and takes off for the event. She comes back in about 45 minutes, unhooks me and takes off to buy a first aid kit for the relay, runs it back, stays for the tribute and walks the first lap with Hannah. She gets home about 10:30.

This is a typical day for my Co-Founder, my wife, my best friend. I often say she's tireless. That's not true. She's tired all the time. Linda has an uncanny capacity to work through pain 
(physical and emotional). Yet her well of compassion for people like Joy is limitless. She's one in a million, my Co-Founder. She's the "foundation of our foundation". Strong as granite and smooth as polished marble. THAT'S why I love my Co-Founder.

Tuesday, July 1, 2014

Honor Someone You Know With ALS and Join the Hope Movement!

Today, The Hope-JG Foundation announces a new initiative to encourage families with ALS/MS and other neuromuscular diseases.

This initiative is closely linked with our Hope Page on Facebook.

The Hope Page began after a friend texted me from a beach in Costa Rica and the result was a photo with "Hope JG" scratched in the sand. Within days, that same friend had reached out to a number of his friends in far flung place and we started getting photos from Singapore, Colombia, Spain, Ireland and more, all with a person holding a sign that read "Hope JG".

We've continued to receive photos from all over and have included some into The Hope-JG Foundation website.

But, even though my initials are attached to the photos and the foundation's name, it's never been about me. That's why we want to add tributes to others afflicted with ALS/MS and other neurodegenerative diseases to the Facebook Hope Page and The Hope-JG Foundation website.

You'll find downloadable Hope signs and complete instructions by following link:!join-the-hope-movement/c9mf