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.

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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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:

http://www.hope-jg.org/#!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: http://www.hope-jg.org/#!about_us/csgz) or want to volunteer, email us at: info@hope-jg.org.


Now...BACK TO WORK!

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. 

https://www.facebook.com/Hjgorg/timeline?ref=hl

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:

http://www.hope-jg.org/#!join-the-hope-movement/c9mf

So...GET BUSY AND JOIN THE HOPE MOVEMENT!

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