2nd Annual Hope-JG Golf Scramble Announced

SAVE THE DATE! August 16th, 2016 will be the date for the second annual Hope-JG Golf Scramble to support and honor families affected.by ALS.  The event will be held at the beautiful,Val Halla Golf and Recreation Center at 60 Val Halla Road, Cumberland, ME 04021 

Now accepting golfer registrations and sponsorships. For more information go to: http://www.hope-jg.org/#!2016-golf-scramble/cd1r 

Fun! Sun! Prizes! Food! Photos! And a chance to support families with ALS. 

Learn more by watching our video...

New Dietary Guidlines Ignore The Sick and Elderly

Every five years the US government releases new dietary guidelines for the American people. The guidelines were introduced this week and recommend a "healthy eating pattern"...as opposed to an unhealthy one, I guess. 

 "One new recommendation is that added sugar should be 10 percent of daily calories. That's about 200 calories a day, or about the amount in one 16-ounce sugary drink. The recommendation is part of a larger push to help consumers isolate added sugars from naturally occurring ones like those in fruit and milk. Added sugars generally add empty calories to the diet."  *Source FoxNews.com

So...these are the new government guidelines for sugar intake. 200 calories of sugar is equivalent to 12.5 teaspoons per day (still a lot). Shouldn't these guidelines apply to the sickest among us too? Obviously not. 

"The carbohydrates in Isosource 1.5 Cal provide the majority of the calories in the tube feeding formula. Maltodextrin and sucrose act as the primary source of carbohydrates in the formula. A 250-ml can contains 44 grams of carbohydrate." * Source: Livestrong.com

People on enteral formulas routinely are prescribed commercial formulas laden with sugars. As described above, Nestlés Isosource 1.5 has 44 grams of carbohydrates, mostly from sugars. If we do some simple math (hang with me, it's worth it): 

A typical adult patient requires 2250 calories per day (or 6 - 250 ml containers of Isosource @ 375 calories per container). At 44 g per of carbohydrates per box (remember, mostly from sugars) that totals 1020 g of carbs per day or 55.6 tsp. If we give the benefit of the doubt that only 75% of those calories are from sugar, that equates to 41.7 tsp of sugar per day.  That's 3.5x the recommended sugar intake of 12.5 tsp!

The new government guidelines say, to stay healthy, Americans should limit sugar intake to 12.5 tsp a day. YET, the medical community is routinely prescribing "semi synthetic nutritional formulas" that pump 3.5 times the amount of sugar into people who are sick and who NEED  REAL FOOD!

Now, I'm sure there are those who will take exception to my math. I'm not a Registered Dietician or Nutritionist. Here are some facts which are indisputable:

1)  Over the past few years the evidence against sugar has been mounting. In March of 2015 the World Health Organization issued the same guidelines as the US just restated. The WHO even took it a step further and stated that 5% of daily intake (6tsp) would "provide additional health benefits". The scientific evidence that sugar is a major contributing factor in cancer, heart disease and Type-II Diabetes is clear.

2)  Enteral formula is a big business cornered by a handful of global corporations. Add to that "nutritional supplements" like Boost (first three ingredients: Water, Corn Maltodextrin, Sugar) and Ensure (first three ingredients: Water, Corn Syrup, Sugar) which are marketed to seniors, and it's a multi billion dollar business.

3)  Liquid Hope, the worlds only organic, whole food feeding tube formula (http://functionalformularies.com/products/liquid-hope), has a Medicare code (B4149).  In spite of this, patients continue to have a more difficult time getting approval for insurance coverage for Liquid Hope than they do more established formulas manufactured by the likes of Nestlés and Abbott. (File under: Things that make you go hmmm...).

4)  Speaking from personal experience and comparing notes with other "tubees", there are unhealthy side effects to the commercial formulas. Erratic gastrointestinal issues (and I'm being polite here), regurgitation which often results in aspiration, and spiking blood sugar levels are just a few. 

 There is a growing community of patients who have taken to "blenderizing" their own formulas. For those who have the time, the help and the willingness to do that, it's a viable and healthy option. But for patients not willing or able to prepare their own formulas, why should they have a harder time procuring a commercially made, Medicare approved, whole food formula than one which is now, by definition, considered unhealthy? 

In the coming  weeks we will be joining others to ask Congress to look into the nutritional content of these sugar loaded enteral formulas and supplements. In my opinion, it's a travesty that the sickest and most frail among us are being told by these global corporations that their products are "nutritionally dense" and full of healthy benefits.  

Patients and Seniors need to know - they deserve to know - what is going in their bodies. More important, they deserve equal access to healthy alternatives. 

Stay tuned for more...

*Note: These comments are my own and are not to be construed to be the opinion of Functional Formularies makers of Liquid Hope.

18 Holes For 19 PALS

The 2015 Ice Bucket Challenge will be different. You need to understand that. This year, rather than just shout "Donate to ALS!" in your ice bucket video,  direct your funds and your challenge to a specific ALS charity. 

We are proud to be listed among the amazing small charities on alsicebucketchallengers.org, a directory of small groups who work with families if ALS daily. The groups are divided into three segments:

-  Research

-  Patient Services

-  Advocacy

So pick a charity (hope-JG.org is a good one), dump your ice, challenge 3 friends and DONATE!

The 19  honorees shown in this video represent hundreds of thousands of families affected by ALS over the years. Donate for them. But choose a charity that tugs at your heart.

Thanks for getting wet and cold.

What Would You Do For A Dying Friend?

What would you do for a dying friend? Bruce Edwards was caddy for golfing great Tom Watson for 30 years. They were best friends. In 2003, Edwards was diagnosed with ALS. That same year Watson, with Edwards by his side, had a dream round at the U.S. Open. Watson shot 5 under par to grab a share of the first round lead. He used that moment to bring attention to Edward's battle with ALS. That was the last tournament Bruce Edwards caddied. He died 5 months later, at age 49. Watson has kept Bruce's memory alive by raising millions for ALS and doing the ice bucket challenge last year. 

The 18th hole at the First Annual Hope-JG Golf Scramble will be dedicated to Bruce Edwards. Each of the 18 holes that day will be dedicated to a family with ALS. Join us in August 18th at beautiful Va Halla  golf course in Cumberland. To register to play or to sponsor the event, go to: hope-jg.org.

If you can't make it or if you don't golf, please feel free to donate online at: http://www.hope-jg.org/#!donate/c1ghi or by sending a check to: PO Box 1805, Windham, ME 04062. Donations of $25 or more made between now and 8/18 will get a Hope-JG tee shirt (please specify size and gray, red or black color preference). We have several individuals who have generously sponsored the event as well. Sponsorship info at hope-jg.org.

Finally, if you're looking for a place to donate your ice bucket money this year, please consider donating to our foundation. You will help us get closer to building a world class ALS/MS Residence and promoting innovative technologies which enhance the lives of the disabled around the world.

#DoSomething

Man On A Mission

I don't know Chris Rosati. Well, I sort of know him, as well as you can "know" a Facebook friend you've never met. As well as you can know someone from the multiple "On The Road" segments of the CBS Evening News of which Chris has been the subject. As well as you can someone who has become a brother in arms by virtue of an ALS diagnosis.. Maybe I know him better than I think.

I reached out to Chris, as I suspect many did, with a Friend request on Facebook after the first "On The Road" story called "Grand Theft: Donut"(http://youtu.be/eMNVJZRIU9s). He graciously accepted and we've Liked some of each other's posts over the past year or so and exchanged a few messages.

Chris was one of the first people on the wish list of honorees for our foundation's first annual golf scramble coming up this August.

(http://www.hope-jg.org/#!golf-scramble-splash/cd1r). We will be dedicating each of the 18 holes to a person fighting, or lost to ALS and their families. We are honored to have Chris among the 18.

Chris is a man always on a mission. He's gone from being the "Krispy Kreme Guy" to a project called "The Butterfly Effect" (http://youtu.be/90PUAMv7-DM). 

Now, Chris has raised the bar for himself and for families with ALS across the country. More importantly, he's raising the bar for arguably the preeminent brand for ALS - the national ALS Association (ALSA). The same ALSA that collected around $120M from last year's Ice Bucket Challenge (IBC). Chris has publicly challenged the ALSA to issue a statement that they will cure ALS by the year 2021. To read the full text of his statement go to 

http://by2021.org. 

The Hope-JG Foundation has officially partnered with Chris and the "by2021" initiative. We are proud to do so. 

The IBC was a global phenomenon which brought ALS into virtually every home, back yard, locker room and office building in the developed world. With the leadership of Pat Quinn and Pete Frates, the IBC will happen again this year and the new motto is "Every August until there's a cure". Awareness of ALS has been raised. It's now time to focus on a cure. No need for brochures, balloons and banners. It's time to truly support the researchers and labs doing the heavy lifting. 

Chris has a plan. Like I said, he's a man on a mission. I'll let him roll his plan out when he's ready. Based on an email from him today, he's logging some heavy miles on his wheelchair and burning up his speech generating device.

For now, join us on what will be Chris' greatest mission to date. Visit http://by2021.org and start using #by2021 and #believe in your Tweets. 

It's time for a cure. And 6 years is more than enough time...if we get serious.

#by2021.

Our 5 Hour Vacation From ALS

It's been a typical roller coaster week for us. The usual appointments with my PT, Massage Therapist and Visiting Nurse. The typical stacks of medical forms and endless phone calls for Linda. A meeting for the foundation and texts and emails from friends and associates. Living with ALS is always an emotional see saw. Each new day, sometimes each new hour, can bring unspeakable sorrow or, at best, no change from yesterday.

But today was different. On this Saturday, we took it easy.well, to be honest, I took it easy. Linda never gets a break from caregiving. Nevertheless we moved at a more leisurely pace, pushed emails and most of the outside world aside and by 2 PM we were ready to go somewhere. 

I know that being ready to take on the day by 2 PM sounds odd, but that's the reality of ALS. Everything takes time. Toilet time? 25 minutes. Washing up? 15 minutes. Change of clothes? Brushing teeth? 20 minutes. Breakfast (2 bags of Liquid Hope)? 90 minutes. You get the picture. Everything a "normal" person does into two or ten brisk steps, a quick reach and a few efficient hand movements, it takes me ten times the effort, 5 times the time and double the people power.

So, at 2:30 were loaded in the Hopemobile and off for parts unknown.  Our vacation from ALS begins. Linda was quoted in a news article, as she told the story of the day a group of friends lugged me up Bradbury Mountain! that on that day, "John didn't have ALS". Today was the same kind of escape, after grabbing iced coffees and sandwiches, we drove to our favorite spot on the campus of Southern Maine Community College, under the shade of a large Beech tree overlooking Willard Beach. Linda and Matt spread out a blanket, Hope (our dog) laid on the grass and we all dug into our food. Even though I get most of my nutrition through a feeding tube I can still eat by mouth and today was a ham and cheese sub with mayo. Yum.

Linda chatted with Matt, I commented occasionally, we all laughed and Hope just watched the few people (and an occasional dog) who wandered past. And the sound of the surf, seagulls snd distant people on the beach melted away any inference of ALS. My wheelchair became a recliner and for those few, precious hours I didn't have ALS. Things were truly "normal".

Tonight, as I sit here with my feeding tube connected to a pump on an IV pole, watching a Netflix movie with Linda, ALS is back. It's back, but it's sleeping. My shower only took an hour tonight. And tomorrow as we wake to get ready for church, who knows? But today, we had a vacation. Precious time without The Monster.

. 

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.