Awaken A Force

By Alan Gard, Devoted Dad (and Jedi Knight Battling Darth Dementia)

Aspiring Jedi Alijah and others with Ds need your help to defeat Darth Dementia!

As December greets us this year, many are in a festive move as a special event approaches…namely the release of Star Wars: The Force Awakens. Over $50 million in presale tickets have already been sold. When was the last time you bought a ticket in advance to go see a movie? I didn’t think so. In other words, this movie is going to be HUGE. There is extreme interest in checking in on Han, Luke, and Leia as well as meeting new characters Rey, Finn, and Kylo Ren.

The Force Awakens will be the seventh entry in the Star Wars saga. In a broad sense, the saga is a simple story of Good vs. Evil, or maybe more accurately it is a story of our individual choices to be Good or Evil and how those choices can change over the course of time and circumstance.

If one concentrates on the original trilogy, Episodes IV – VI, the story is Luke Skywalker’s Hero Journey.  It starts with the Call to Adventure from humble beginnings. In Luke’s case, he is reticent at first. He is too busy with the harvest to get involved. That sounds familiar to most of us in the frenzy of our day-to-day lives! He eventually heeds the call and over the course of this story arc redeems his father and brings down the leadership of the Galactic Empire.

Of course, now the story won’t end there and much of the interest in The Force Awakens is in what becomes of Luke after the story left off 32 years ago. With one Hero’s Journey complete, we now will learn what happens when there is another chapter:

• Does Luke stay a hero?
• Does he turn to the Dark Side?
• Does he become a character more gray than at the black or white end of the Dark vs. Light spectrum?

As one who grew up with the original trilogy, Luke is the character in which I have the most interest as the new saga begins.

The story could also be an ongoing story of The Force, a metaphysical energy that binds everything in the universe together and gives those who are genetically and spiritually gifted to tap into it magical powers. It has its basis in the concept of Prana, meaning “life force” from Hindu culture. This view makes the story one about how we are collectively part of something bigger and all must play our role in that story.

If viewed over the entirety of the six episodes released to date, it is the Story of Anakin. He starts as a slave, learns he is strong with The Force, is trained, becomes a Jedi, turns to the Dark Side becoming a Sith Lord named Darth Vader, gets severely injured in a duel with his original mentor Obi-Wan, gets saved by the Emperor and technology, serves as the Emperor’s sergeant-at-arms in oppressing the galaxy, vanquishes Obi-Wan, fails to crush the Rebel Alliance, discovers he has a son, cuts son’s hand off in a duel, takes his son to the Emperor to be turned to the Dark Side, turns on the Emperor and kills him, and then dies having returned back to Good. And that’s the simple version!

In my view, Episodes I – VI are really a rise and fall story of the Sith, an order that derives power from the Dark Side of the Force. This order sought to elevate the strong and eliminate the weak. But throughout the Star Wars story, the Sith are foiled by those they might consider weak working together to overcome them.

Unfortunately, the Sith are not confined to a galaxy far, far away. We have a Sith Lord among us here, and his name is Darth Dementia. He is a particularly ruthless enemy. He steals the souls of his victims and inflicts pain on suffering on all those around them.

I have witnessed Darth Dementia firsthand. Growing up, visits with my Great Aunt Catherine showed me what Alzheimer’s related dementia could do to one’s ability to know their family. Imagine how sad an existence it would be to not be able to connect with your loved ones from both sides of that diagnosis. As a young adult, I saw two of my uncles suffer from Parkinson’s disease and the dementia that can eventually accompany that disease.

Now I am a parent to a child with Down syndrome. While my wife and my current energies are spent trying to help Alijah develop and reach his potential, Darth Dementia is an ever-present, dark-cloaked figure in the corners of our minds. As one who works with numbers, I know just how stacked the odds are against Alijah in his fight to hold off Darth Dementia. To think that all the gains Alijah is making could be taken away so early in his life is a heartbreaking concept. But, as of today, that is a very likely scenario.

Luckily, there are already a few Jedi taking on this powerful Sith Lord. But as the movies have shown, the only real victory comes when the multitude work together. So if you are an aspiring Jedi, you have an opportunity to be a hero in this story. Or if you see yourself as more of a Wookie or an Ewok, you can be a hero in this story too. Imagine if everyone who has already pre-ordered their The Force Awakens ticket got so inspired by the movie and the fight against Darth Dementia that they came home and made a donation in the amount of their movie ticket. $50 million would serve notice to Darth Dementia that that his power was at risk.

If all those that see the movie would do the same thing, it would change the conversation from IF we can do it to WHEN. And asking when is a MUCH better question than asking if – not just for those with Down syndrome, but for each and every one of us that want to keep ourselves and our families safe from Darth Dementia’s soul-stealing clutches. While Darth Dementia may play favorites toward victims with an extra chromosome, they are not his only prey.

Think back to where the Star Wars phenomenon began. It began with A New Hope. Any donation now—big or small, the price of a movie ticket, whatever—will in fact make A New Hope come true in the lives of those most at risk and their loved ones. Don’t let the supposed constraints of the “harvest” in your life deny you your own Hero’s Journey. And while we—at least us non-insiders—don’t know where the story goes after The Force Awakens, I am positive there is a place in this story for us all to help Awaken A Force to defeat Darth Dementia once and for all. I definitely want that to be a part of my story. I hope you do too.

Thank you for your consideration. And may The Force be with you!

1989

Alan Gard and his son Alijah look back to 1989 for Down syndrome research inspiration: Let’s tear down down these walls!

By Alan Gard

The year 1989 has gotten some attention of late. This is primarily due to it being the birth year of Taylor Swift, she of recent world domination.  She even paid homage to that year as the title to her most recent album, which also was the final step into her total transformation to pop stardom.

It got me to thinking about what I remember about 1989. Well, first it got me to thinking how many people alive now can’t remember 1989 because they weren’t even born yet then. I am old!  I had to confirm some of what I remembered, but 1989 had a lot of events that for better or worse even those not born yet then probably know about. There was the San Francisco earthquake that delayed the World Series. That was the year of the Exxon Valdez disaster.  It was the year of the Tiananmen Square protest. The Hillsborough disaster at a soccer stadium in England was a 1989 event.

Not everything that happened that year was a disaster though. The Berlin Wall came down. Dead Poets Society and Indiana Jones and the Last Crusade entertained us. San Francisco 49ers fans remember it fondly as they won one of the most exciting Super Bowls in January, 1989 and then had a dominant season in the fall that led to another Super Bowl title (won in January of 1990).  The first version of Microsoft Office was released. Well, I’ll let you all be the judge of whether that was a good or bad thing given how much of an influence that suite of programs has impacted many of our work lives (at least in my actuarial circle).

One may be reading this and thinking, “What does any of this have to do with Down syndrome or Down syndrome research?” Please indulge me a little longer.

1989 is also the title of an album Ryan Adams recently released. It is a track-by-track reimagining of Taylor Swift’s popular album and it is quite a different take. One has to work to not dance a little while listening to Taylor Swift’s “Shake It Off.”  When I hear Ryan Adams’ version, I think I’m listening to a sequel to Bruce Springsteen’s “I’m On Fire.”  Adams’ version of “Out of the Woods” is draped in a melancholy we haven’t heard from Taylor Swift since Drew was the reason for the teardrops on her guitar. Mr. Adams makes a couple lyrical changes to “Blank Space” to make it more gender appropriate (and as an aside he removes the most iconic lyric on Ms. Swift’s entire album: “Cause darling I’m a nightmare dressed like a daydream”), but you’d never notice because you’d never think they are even the same song.

Now, most people probably ask the question, “Who is Ryan Adams?”  And because of that, a project like this is subject to claims of being a novelty or a cry for attention…a way for him to capitalize on one of the most popular albums of recent memory.  I personally don’t hear that at all. I think his courage in following his artistic instincts creates something well worth the investment.  And it provides some lessons that have a lot to do with Down syndrome and Down syndrome research.

First it gets people talking. There is a tendency for Down syndrome and Down Syndrome causes to be left out of the broader conversation. There is nothing worse than silence, so it is beneficial to be provocateurs in bringing Ds into mainstream discussions.

Second, one of LuMind RDS’s Dr. Harpold’s sayings related to research is, “If we don’t try, we don’t know.” This saying applies to Mr. Adams’ project too. I’m sure he didn’t even know how this was going to turn out. Regardless of whether one likes the album or not, we’d never know how good these songs are at their core…without their pop “makeup” if you will. And we are better for knowing just how good they really are. The Down syndrome community will be better for all research projects, even the ones where there wasn’t an earth-shattering breakthrough. We still learned lessons and thus research endeavors need to be encouraged.

Finally, it makes us think a little more about 1989 and, hopefully, about one particular event I listed above: the Berlin Wall being torn down. Think about how symbolic that was for so many people who had lived under oppression for so long. The opportunities offered by Ds research can break down walls and release many from the oppression of the fear of cognitive decline and not having their full potential recognized. If the thought of tearing down big walls excites you, LuMind RDS has a blank space for you, please write your name.

Pitching EDGY

By Alan Gard, Golf Warrior and Devoted Dad

Around last Christmas time, I had the book EDGY Conversations: How Ordinary People Can Achieve Outrageous Success by Dan Waldschmidt, recommended to me by someone who had interacted with the author at a corporate event. The book was an entertaining and quick read and covers many of the better leadership lessons. I especially liked how Mr. Waldschmidt boils down his thesis to the acronym EDGY. As I prepare for my Hundred Hole Hike coming up on Monday, I’ve started reflecting on how my participation in the Hike holds up against those four adjectives.

E = Extreme

At least this one is easy. The Hike definitely fits under the category of Extreme…maybe too much so. Despite a lot of outreach by the team at LuMind RDS, we were unable to find anyone interested in joining me in doing a Hike for this cause. But it is the Extreme that makes it interesting. I think we would all be better if we pushed ourselves to our limits for our passions, and if it can help serve a cause at the same time then all the better.

D = Disciplined

My Hike experiences are not a product of an obvious discipline. If I was really disciplined, I’d have been working out regularly for the last several months and sharpening my golf game. Well, I haven’t been to the gym all year and haven’t played my own ball with own clubs in a single round of golf yet this year. Yeah, I’m disciplined! I hope that one of these years I can actually be disciplined in my prep for the Hike to see if that can help me up either the quantity or quality of my play. But in the context of the time I have, I am disciplined in that I sit on an exercise ball for the hours that I spend working at my desk at work. I pace my office frenetically in the many hours I spend on conference calls. And at home I am constantly chasing or lifting one (and frequently more than one) of my three children. So in retrospect I think I am quite disciplined at working all the exercise I can into my natural life rhythms without actually making an official gym visit. And the day of the Hike, I’m pretty disciplined at moving at a brisk pace and plodding along to the goal. I think the fact that I’ve successfully completed two Hikes to date speaks to some discipline in my approach.

G = Giving

This is really a tribute to my many generous donors who continue to support me year after year that my Hike does qualify as Giving. I’m playing golf for a day; yeah, right, that qualifies as Giving. What a sacrifice! But thanks to generous donors the organizations I did this for the last two years have gotten access to funds/donors they wouldn’t have otherwise. And this year there is a solid trajectory to making a difference for a third organization with my three-year fundraising total exceeding $30,000 counting current pledges. For someone who doesn’t have that broad of a network yet, I feel very good about that. Once again, thank you to everyone who has supported me!

Y = Human Factor (you’ll have to take that up with Dan Waldschmidt)

This is the one I struggle with the most. Has my Hike really created human connections? I’ve had several people that have generously donated each year. That must qualify, right? Every year there have been instances of people saying some very thoughtful words to me followed by then making generous donations. Those are definitely moments of human connection. But there is part of me that feels I’ve fallen down on this one. My donors are all people I know. If I was really living the Human Factor, wouldn’t I be connecting to people I don’t already know too? Shouldn’t I be able to get people excited about the cause too? I think my inability to generate donors just because it is a worth cause means that, at best, I have a development opportunity here. And those of us in corporate America know what that really means.

So as I’m walking on Monday, I will be thinking a lot about that Y and whether I’m only living EDG, which we all know is gibberish and doesn’t really have much meaning, and how I can work to earn that Y.

Since all my thoughts relate back to music sooner or later, as I think about that Y on Monday, I’ll be pondering some of the lyrics from a song by that great philosopher, Kermit the Frog, “Rainbow Connection:”

I’ve heard it too many times to ignore it
It’s something that I’m supposed to be
Someday we’ll find it
The rainbow connection
The lovers, the dreamers and me.

Someday, hopefully I will find that connection. But, no offense to Kermit, I hope I don’t see any rainbows on Monday.

Editor’s note: It’s not too late to join Alan in his 100 Hole Hike Challenge. The Hike can be completed at your local course, anytime in the summer or fall. Let’s help Alan fill out the Y-factor by showing your support. And… THANK YOU ALAN, for your Hike, support and inspirational words on the Plus15 blog. We wish you the best on your 100 Hole Hike!

A Declaration of Independence

Happy Independence Day!

By Alan Gard

This year I took the time to re-read the Declaration of Independence.  And as I was reading it, there were a few things that resonated with me as I prepare for my Hundred Hole Hike to raise money for LuMind Research Down Syndrome.

While Alijah is not oppressed by a tyrant king from across the Atlantic, there are several offenses on which we need a revolution to improve the lives of people with Down syndrome.

• “For imposing Taxes on us without our Consent”: Financial planning for Alijah will be an ongoing concern. For many of the services that he will depend on, a minimal level of assets in Alijah’s name will disqualify him. Thankfully, with the passage of the ABLE Act, the revolution on this has begun. We still need the States to take action, and in today’s political climate, action of any sort is no gimme. Because of tax and other laws, I have to treat Alijah differently than I do my other two children, and from that world we need a Declaration of Independence.
• “He has dissolved Representative Houses repeatedly…”: More accurately, there have not ever been Representative Houses for people with disabilities to dissolve. But therein lies the problem. People with disabilities have no true representation. They constantly rely on others to advocate for them. While there organizations that take on this task, they need more funding to be truly meaningful.
• “For cutting of our Trade with all parts of the world”: The taxes and income aspect is covered above. But the world today sees the disability, not the ability…not the strengths. A focus on the strengths of these individuals would be a boon to our economy and would enable people with disabilities to be Independent and fulfill their potential.

As I think about the Chariot I want to be for Alijah, the aspect that is of greatest importance to me is for Alijah to be able to Declare his Independence…and maintain his Independence. And that is why cognition research is so important.  In the first place, it will offer the greatest likelihood of Alijah writing his own Declaration of Independence. But a very big risk is of him losing his Independence to early-onset dementia. The benefits of cognition research could be critical in Alijah maintaining his Independence.

That outcome is one that is very exciting for me this 4th of July. Your support of my Hundred Hole Hike is your opportunity to emulate John Hancock and make your signature big enough for all to read that you will add yourself to the List that will help Alijah and others like him overcome their disability to become Independent and stay Independent value-adders to our society.

Please consider supporting an Independence Day for Alijah and others with cognitive disabilities.  Thank you for your consideration!

– Support Independence for people with Down syndrome by sponsoring Alan in the Hundred Hole Hike – or join the revolution to support cognition research by starting your own team challenge!

What Do You Want to be When You Grow Up?

By Beth Gard Beth Gard is wife to Alan and mom to Gabe, Alijah, and Dalaney and leads Medical Outreach for the Down Syndrome Alliance of the Midlands. She is also Alan Gard’s caddie as he completes the Hundred Hole Hike to benefit LuMind RDS Foundation and Down syndrome cognition research.

What do you want to be when you grow up?  We have all been asked this question. We’re asked it as soon as we can speak and that’s usually as a toddler. And of course a toddler has an answer for that question!   This question is easy for our oldest son, Gabe. Since he could talk he has wanted to be a train engineer. He’s been obsessed with trains since he was a baby and right now he is equally obsessed with Legos.  Alan and I joke that he is our master builder train engineer. Alijah is starting to say words now (that’s very exciting for all of us). He can’t tell us yet what he wants to be, but based on his interests he wants to drive a backhoe loader or be a ball player. When you ask Gabe “whom” he wants to be when he grows up, he wants to be a dad. I assume that’s because he has an excellent role model for a dad. I wonder “whom” Alijah will want to be when he grows up…

As a parent of a child with special needs it’s hard not to think about your child’s future. When we first found out that Alijah had Down syndrome we were worried about everything, but we were particularly concerned about his future. From day one we were committed to giving him everything he needed and to make sure we had the same expectations for him that we had for Gabe. We want him to go to school, to go to college, to fall in love and most of all to lead a fulfilling life. But, for all of these milestones to occur for Alijah we need to advocate for him in all areas of his life. I do tend to focus on Alijah’s future probably more than I do on my other children’s futures. Since Alijah was three months old my main concern has been about school. Anyone close to me will tell you that I feel extreme stress when I think about school. It doesn’t matter if it is preschool or elementary school. I feel sick at times trying to make sure that we make the right decisions for Alijah. But in April, I attended one of our local Down syndrome organizations’ educational presentations by Dr. William Mobley, a neuroscientist from the University of California San Diego, a LuMind RDS funded researcher. Dr. Mobley came to speak to us about the links between Down syndrome and Alzheimer’s disease. He began by providing evidence that the brains of people with DS don’t function like those of typical people. This information wasn’t surprising since I see this everyday when Alijah is processing information or responds to requests and directions. Dr. Mobley also provided us with the evidence that the plaques that are characteristic of Alzheimer’s begin to develop at age 40 in individuals with DS. I also knew this, however, hearing it and seeing the data hit me hard. Maybe it was because I was a month away from turning 41. Maybe it was because it was a long day with Alijah and Dalaney (as most days are right now). Maybe it was a combination of a lot of things. I thought, “I’m 40 and for the most part I still feel like I am in my 20s.  I tend to forget things from time to time, but who doesn’t?” I started to wonder what Alijah will feel like when he is my age. What will his cognitive level be at 40?  And then the thoughts and scenarios started to snowball as they tend to do when something negative pops into my head. Then I started to think about who is going to take care of Alijah when he starts to experience this decline?  God willing, I’ll still be on earth, however I will also be nearing 80. I discussed this with a friend and she joked we would both be in the old folks home, demented together.  I laughed because I saw some humor in it (sometimes you just have to find the humor in even the most sad situations). Unfortunately, despite the jokes and lightheartedness that can be made of situations, this could happen. These thoughts have never occurred to me when I think about Gabe and our youngest child, Dalaney, when they reach 40.  I assume Gabe and Dalaney will be in the prime of their lives established in their careers, possibly married and/or raising children, hopefully happy and healthy. I wish sometimes these thoughts about Alijah would never come to me. I wish I had blinders on to the reality of what life could be for Alijah as things stand now.  I don’t want to imagine my son who is smart, fun, stubborn and nothing short of happy even when he is having what is his worst day not living a fulfilling life once he reaches middle age. The need for cognition research in individuals with DS is so important, not only to help improve their memory and learning ability while they are young, but also to develop drugs to help delay or even cure Alzheimer’s. Even though DS is one of the most common genetic conditions, it is one of the least funded for research. Organizations such as LuMind RDS and others are paving the way to raise funds for research and awareness that DS research is not only a necessity for the DS population, but the general population as well. As Alan embarks on his third hike I hope that you will consider donating to his team in the Hundred Hole Hike or perhaps start your own team and raise funds for research. Our cause isn’t just about raising awareness it’s about advocating for people with DS to make sure that research is being done to improve their cognitive quality of life. I look forward to the possibilities that cognitive research advances can offer to Alijah and others with DS to help them achieve their goals and to lead fulfilling lives. I am anxious to hear what Alijah wants to be when he grows up and helping him live out his dreams!

100 Holes of Golf: Are You Up for The Challenge?

Can we get 10 people in 10 cities, each playing 100 holes of golf? That’s 1000 holes of golf, each one funding Down syndrome cognition research.

By Alan Gard

My two-year-old son, Alijah, has Down syndrome, and the last two years I have done the Hundred Hole Hike to raise money for Ds causes. The Hundred Hole Hike is a golf “marathon” where participants walk and play 100 or more holes of golf in one day.

This will be my third year completing the Hundred Hole Hike. The first year, I did the challenge alone. Last year there were four of us raising money for Down syndrome causes. This year, I want to inspire a small army of people throughout the country to support Down syndrome cognition research by joining me in the Hundred Hole Hike challenge.

• Read more about the Hundred Hole Hike at www.hundredholehike.com and you can see my Hike site at http://hundredholehike.com/golfers/alan-gard where you can make a pledge.
• Make a flat donation or submit your pledged donations on the LuMind RDS Hundred Hole Hike event page.
• Start your own fundraising campaign! Come on – it’s fun to play 100 holes of golf in one day! Sign up today on the LuMind RDS Hundred Hole Hike event page.

I’m asking for your support – either by joining the event yourself or supporting me or one of the other LuMind RDS golfers. We want to raise the the profile of this fun event, part hike, part golf, all for a good cause. Of course, I’d appreciate any help you can give to spread the word on social media sites and to your network. Remember to tag me on Twitter @CrossingGard.

Working with the folks here at LuMind RDS, we decided to challenge 10 people to join me over this summer. It’s part an endurance sport, part fundraiser, and 100% act of love for my son and others with Down syndrome.

100 holes of golf that make a difference. Won’t you join me in golfing for good?