ALS Advocates and Congress Must Have a Contingency Plan If CMS Doesn't Respond to Congressional Letter

Here is a link to,a press release tailored to the Maine constituents of two Senators who signed the September 11th letter to Administrator Tavenner of the Centers for Medicare and Medicaid Services (CMS) regarding Speech Generating Dèvices (SGD's).  I want to publicly thank Senator Collins for co-sponsoring the letter and to Senator King's staff for getting engaged in this issue early on. 

Clearly, there were many parties involved in crafting the letter and getting the 200 signatures of other members of Congress. Nonetheless, the letter called for a response to pointed questions from CMS on or before October 1st. I've written my contacts at both King's and Collins' offices to ask what the contingency plan is should CMS miss the deadline. So far, no answer.

As individual advocates, and even the advocacy groups formed by professional associations and organizations, we should be prepared with a unified strategy assuming CMS does not respond satisfactorily to the letter from Congress by Oct. 1st. WE MUST BE PREPARED TO MAINTAIN THE PRESSURE ON CMS TO ENGAGE IN AN OPEN, HONEST DIALOGUE FOR CHANGE!

If CMS maintains their current position of obfuscation, blaming manufacturers of SGD's and pointing to the National Coverage Determination, and the various individual advocates and industry and professional advocacy organizations don't coordinate our efforts, any change will take longer - and ALS patients don't have time to waste.

As the line from the movie Gladiator says, "As one!"

http://politicalnews.me/?id=30211&keys=SGDS-ALS-NEUROLOGICAL-DISEASES

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:

http://blogs.microsoft.com/firehose/2014/07/28/microsoft-kicks-off-oneweek-and-you-wont-believe-the-hacks/

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. 

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

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

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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.

http://alsn.mda.org/article/home-als-house

Please visit our website and raise your hand if your heart says "Help them."

http://www.hope-jg.org/#!projects/c21kz
(Watch the videos at page bottom.)

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. 

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.

http://www.huffingtonpost.com/2010/01/04/anatomy-of-isolation-als_n_409901.html

A Son's Love Drives His Passion to Innovate

 

When Ivo Vieira, CEO of lusospace, contacted me last month one thing was clear: He loves his Father. Ivo's dad was diagnosed with ALS in 2013 and has lost his voice. Traditional eye gaze technology is frustrating for him at best. But Ivo perceived an opportunity where others saw frustration and despair.

Ivo explained the technology his team had been working on. Eyeglasses which would project a virtual, eye gaze capable keyboard in the wearer's field of vision and would "speak" what is typed with the eyes thru built in speakers. Pretty cool.

The Hope-JG Foundation did some research and we decided to include  Mr. Vieira's new company, lusovu, and the glasses called Eyespeak, as our third Innovator.

Because ALS is an orphaned disease, it's almost always family, friends and the afflicted who are passionate for change. We love passion - and we love this concept.

To find out more, go to our Innovators page by clicking here. http://www.hope-jg.org/#!innovators/c23ff

Check out their Kickstarter campaign and think of the possibilities:)

https://www.kickstarter.com/projects/886924859/eyespeak-beyond-communication