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!

Get Down Syndrome Represented on the Cover of Runner’s World

The amazing Lara Font, a LuMind RDS Board member, is in the running to be a featured on the cover of Runner’s World. The contest is looking to showcase inspiration, passion and athleticism and this mom of four checks all the boxes. Lara began running competitively after her fourth child Parker was born. Parker has Down syndrome and Lara was inspired to join LuMind RDS Runner’s and fundraise so researchers could seek ways to improve cognition in people with Down syndrome.

Vote for Lara and get DS Represented! You can vote twice each day – right now Lara isn’t in the Top 20 – can the Down syndrome community get her 5000 votes in two days? Yes, we can – let’s go!

On Why She Runs: “Every runner has a story..it’s what I love about runners..learning what motivates them to run. I grew up as a competitive athlete, so I stay active. My inspiration is my 4th child, Parker. I run to raise funds for cognitive research for Down syndrome. After Parker was born, I needed an outlet, a place to process on things, relieve stress, and most importantly stay healthy. In the last 2 years, I’ve run over 24 half marathons, countless 5K, 10K’s and last year ran my first full marathon! More importantly we’ve raised over 55K for research!”

Her Most Significant Running Accomplishments: “I ran my first Marathon – Bank of America Chicago Marathon in 2014 and I Boston qualified! Looking forward to 2016 for Boston! We love Disney and run most of the Run Disney races. In May I received my first Disney Masters win for the 10K. But, I’m most proud of Parker’s first 1K race in March on World Down Syndrome Day – our entire family ran! Seeing Parker cross the finish hands raised high and his smiling face was priceless! It is good to be a Masters runner – I’ve had a quite a few placements and wins this year!”

How Running Changed Her Life and the Lives of Others: “Running reminds me how hard Parker works to accomplish things we all take for granted. He had open heart surgery 5 years ago and endures countless hours of therapy a week. He doesn’t ever give up. Running has inspired our other kids to get involved in charitable causes and help raise awareness for the need for cognitive research for Down syndrome. Running has allowed me to connect with families all over the US and bring awareness to the continued need for cognitive research for those living with Down syndrome. Running to fundraise brings necessary funds to research.”

But why does she really run? Meet Parker:

21st Century Cures Act Passes in US House – What It Means for Down Syndrome Research

By Dr. Michael Harpold, LuMind RDS Chief Scientific Officer

The 21st Century Cures Act, originating and developed out of the US House Energy and Commerce Committee, has been working its way through to a vote in the US House of Representatives. LuMind RDS signed the letter of support organized by National Health Council, in conjunction with our membership with the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), which had more than 250 organizations as signatories.

Prior to the vote on the overall Bill in the House of Representatives, there was a problematic “Brat et al. amendment” that had been introduced which would have jeopardized the increased funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) provided in the Bill as well as the wide bipartisan support. Through the National Health Council/United for Medical Research, LuMind RDS, along with more than 270 other organizations, signed on in opposition to the “Brat amendment” (http://www.no2brat.com/).

I am quite pleased to update that Friday July 10, 2015, the 21st Century Cures Act passed the US House by 344-77, and the “Brat et al amendment” was defeated by vote of 141-281. Among other aspects that are important for Down syndrome, the Bill increases NIH’s budget by additional $8.75 billion over five years. 

This is good news because the flat (in actuality, significantly declining in real dollars) NIH budget over the past five years or so has had a major impact in reducing the number and size of NIH research grants. The increased funding should increase overall NIH grant applications’ funding success and increased numbers of NIH grants, including hopefully more grants for Down syndrome research.

But before that increase is realized, the Bill needs to now make its way through and pass the Senate… which will be an additional effort for continuing support from the Down syndrome community.

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!