What’s happening in Down syndrome research?

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

We 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.

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!

2015 Awards Gala: Remembering Bright Minds

For our first Awards Gala we wanted to honor the best and brightest and cognition research today, but also pay tribute to great minds who are no longer with us.

Dr. Edgin receiving the Dr. David R. Cox Rising Star award.

We awarded Dr. Jamie Edgin the Cox Rising Star Award. This award is named in honor of David R. Cox, M.D., Ph.D. a world-renowned geneticist and inaugural member of the LuMind Research Down Syndrome Foundation’s Scientific Advisory Board. Some of Dr. Cox’s significant professional accomplishments included:

• making instrumental contributions to the Human Genome Project
• serving as a professor of genetics and pediatrics at Stanford and co-director of the Stanford Genome Center
• participating in several international and national councils and commissions; and
• elected to the Institute of Medicine of the National Academy of Sciences.

Since Cox was always curious, innovative and a pioneer, the Cox Rising Star Award recognizes distinction in Down syndrome research by early career researchers.

Dr. Mobley receiving the Cohen Researcher of Distinction Award, named in honor of William I. Cohen, MD.

Dr. William Mobley received the Cohen Researcher of Distinction Award, named in honor of William I. Cohen, MD, a great friend, colleague, and very active and highly supportive inaugural member of LuMind RDS Foundation’s Scientific Advisory Board.

Bill Cohen was widely recognized for his deep compassion and contributions to the medical care of children with Down syndrome, and his unwavering commitment to, and support of, the entire Down syndrome community. His energy, joy for all of life, and enthusiastic excitement for the potential of the most rigorous new evidence-based biomedical research for creating new opportunities for all people with Down syndrome has been inspiring to researchers, physicians, as well as all in the Down syndrome community and beyond.

This award recognizes a major impact on accelerating the pace of Down syndrome research through open access, participation and collaboration.

See photos from the awards gala.

Welcome back from the Inaugural T21 Research Society Conference

Bon voyage to all the Down syndrome researchers who attended the Inaugural T21 Research Society Conference in Paris, France.

Our Chief Scientific Officer Dr. Michael Harpold attended the conference and participated in a general discussion about Science and Society that covered the following discussion points:

• The gap between science & society
• How can T21RS help to close the gap?
• New initiatives, collaborations with T21RS Committee for Science & Society

Dr. Harpold participated in the panel discussion along with his fellow research-focused colleagues from the Catalan Down Syndrome Foundation, Down syndrome international, Fondation AMIPI-Bernard Vendre, Fondation Jérôme Lejeune, Global Down Syndrome Foundation, Matthew Foundation, and Trisomie 21 France.

LuMind RDS is proud to be a conference sponsor and Founding sponsor of the Trisomy 21 Research Society along with:

• Fondation Jérome Lejeune
• Matthews foundation
• Trisomie 21 France
• Global Down Syndrome
• Transition Therapeutic INC

Learn more about the t21 Research Society.

Not Ready To Make Nice

Hello!

As a newcomer to this blog, let me introduce some of the basics about myself: My name is Alan Gard. My son Alijah who just turned 3 has Down syndrome.  I’m preparing for my third Hundred Hole Hike to raise money for a Ds related cause, and I am now focused on raising money for LuMind RDS.

Last year, my theme was Iridescent, and you can read more about what I mean by that at http://hundredholehike.com/blogs/iridescent. That piece focuses on some of my early emotions after Alijah was born. While, I have let go of the negative among those as I stated there, I am inspired in a different way this year. Certain lyrics of the Dixie Chicks’ song “Not Ready To Make Nice” particularly resonate with me:

“I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell, and I don’t have time
To go ’round and ’round and ’round”

There are several things about which I’m Not Ready to Make Nice as it relates to things that come along with a Down syndrome diagnosis. One item at the top of that list is the increased risk of Alzheimer’s disease for those with Down syndrome. I’ve seen estimates that Alzheimer’s disease affects 30% of people with Down syndrome in their 50s, and by their 60s almost 50% of people with Down syndrome have Alzheimer’s disease. Statistics like this drive a great sense of urgency, particularly when one considers the higher risk Alijah has of early-onset Alzheimer’s disease.

But my sense of urgency will do little to help Alijah in this regard. Luckily, there is an organization like LuMind RDS with a mission to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome with a particular focus on the avoidance of early onset of Alzheimer’s Disease.

This is where I deviate from my theme song’s lyrics. I am going to make time to go ’round and ’round and ’round–the golf course that is–by doing the Hundred Hole Hike (HHH).  HHH is a national-network of golf marathons where participants walk 100 or more holes of golf in one day in order to raise money for various worthwhile charitable causes. LuMind RDS certainly qualifies.

Please consider supporting me in my Hundred Hole Hike with a donation to LuMind RDS. Or even better, plan to make your own Hike at a course near you to raise money for this cause.

As a final thought, one of the later lyrics in the song is this: “It turned my whole world around
And I kinda like it,” which is also very appropriate. Like the birth of any child, Alijah has turned our whole world around, but we more than kinda like it.  We LOVE it!

Thank you for your consideration!