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