Thursday, January 29, 2015

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 BernhardConcrete

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

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