Jersey Tough – 24-Hour Relay Run For Research

LuMind Research Down Syndrome thanks the 24-Hour Relay Run for Research organizers Lisa Arnoa and Matt MacDougall, and all the runners, walkers and sponsors who participated in this non-stop fundraiser held in Denville, New Jersey July 25-26, 2015.

The Second Annual 24-Hour Relay Run for Research is a team event, in which each team member takes a turn running one mile around a one-mile loop. Upon completing the mile, that team member passes a baton to the next runner. The run continues as such…. for 24 hours in a row! Teams traversed the oval beginning at 8:00 a.m. on Saturday through 8:00 a.m. on Sunday, raising $8000 along the way! THANK YOU!

As Bob Schoen, LuMind RDS Director of Donor and Event Engagement, wrote to the team, “I always hear ‘JERSEY TOUGH.’ You guys are all that, and full of ‘JERSEY LOVE’ to boot.”

During the 24 hour period, 28 runners accumulated 220 miles, which were sponsored by individual donors and businesses. What a great support for LuMind RDS, our Runners program, and Down syndrome cognition research!FY 15 24 Hour Relay Team

Lisa, whose son Sal who has Down syndrome, thanked the participants and sponsors appreciating their support, “A new journey began for me the day Sal was born and I am so thankful to all you for joining me in making a difference in the lives of those with DS.”

Matt also thanked everyone for their help, participation, and support and wanted to recognize one individual in particular, Steve O’Hanlon.

“Steve had truly dedicated himself to our cause from the first day we informed him that we were beginning this annual tradition,” wrote Matt. “With no thought of reward or return, Steve jumped right in and donated his time, his money, his materials, his knowledge, and his compassion…he has truly given to us in a way not many other people can, and he should be commended. You don’t find people like Steve that much anymore, so when you have friend and colleague like him, it’s important that we thank him and credit him for the great work he has done!” We agree – THANK YOU STEVE!

The generosity of the 24 Hour Relay Race for Research community now and in the past is key in the remarkable progress of this most incredible medical initiative: funding research to develop therapies to assist learning and memory and speech, and offset the potential impact of Alzheimer’s disease, in people with Down syndrome. In just a very short period, progress has led to three ongoing clinical trials and a fourth soon to be initiated. Your efforts have helped to make this happen.

“Thank you Matt and Lisa,” said Bob. “When I first met you, I knew we had supporters for life. Between running events and the 24 Hour Relay, you are proving me right!” Matt and Lisa were among our first LuMind RDS runners and have supported fundraising for cognition research with half marathons and other running events.

We can’t say enough how much we appreciate the dedication and creative fundraising of our supporters. Matt and Lisa have the support of their “Jersey Love” community and we are so happy to include them in our LuMind RDS family.

Thanks to the efforts of Lisa, Matt, Steve and all the other Relay Run for Research participants, Sal and others with Down syndrome will have a future of greater independence and enhanced life opportunities.

 

Pitching EDGY

By Alan Gard, Golf Warrior and Devoted DadFullSizeRender

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)

IMG_4225This 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

Lara Font Disney MarathonThe 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

US_Capitol_SouthThe 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

MP900398761Happy 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’s happening in Down syndrome research?

How do you keep up with the latest in Down syndrome research?

NewspaperWe know you love Dr. Harpold and all the LuMind RDS-funded researchers who let you know about the advances in cognition research, but there’s a big world of discoveries out there.

We’ve curated the latest scientifically-credible articles for you on our website. We’ll be keeping this page current, so please send us any articles that interest you. We want to be sure we – and you – see it all!

Check it out: LuMind RDS: Down Syndrome Research News.

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. Beth_Alijah Gard

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?” Alijah Gard Beth Gard Alan Gard Hundred Hole Hike Down syndrome researchI 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!