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!

Welcome back from the Inaugural T21 Research Society Conference

t21RS logoBon 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!

AlijahFullSizeRenderAs 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!

DS Guild of Greater Kansas City – 360 Support of Cognition Research

DSGKCBy Veronica Fratta

The Down Syndrome Guild of Kansas City (DSG) has been one of LuMind Research Down Syndrome Foundation’s strongest supporters. Today, we’d like to shine a light on all the good work they are doing.

Amy Allison is the Guild’s director of 13 years. When she arrived, many DSG programs were directed towards infants and young children. She made it her mission to reach out to families with older children and adults with Down syndrome, and today DSG offers a vast array of programs for people from birth to 70. With 1,300 members in 37 counties and two states (Kansas and Missouri), the Guild helps many individuals over a large area.

It became evident early on that DSG also needed to expand outreach efforts beyond serving families to include school districts, service providers, and medical professionals, or DSG would just be “preaching to the choir.” DSG began an extremely successful program to educate and train these other organizations to better interact with and support individuals with Down syndrome. The Guild’s Parents and Schools in Partnership program has been so effective that DSG has consulted with 15 other Down syndrome organizations to help them launch the program.

Another area where DSG has been heavily involved is cognition research. The members of DSG recognized that finding a therapies that could improve memory and cognition would be key to advancing opportunities and quality of life for people with Down syndrome. Since research was beyond the scope of DSG’s abilities, the organization sought out a research entity that had the contacts, the know-how, and the resources to make a real difference…which is where LuMind RDS Foundation comes in!

That journey led to Amy joining our board, becoming an invaluable member for the past three years. She’s dedicated to helping us find treatments to improve the lives of our loved ones with Down syndrome. As Amy says, “Increasing the IQ of a person with Down syndrome by 15-20 points is dramatically life changing. It can mean the difference between living at home and working in a sheltered workshop or being competitively employed while living in the community.”

DSG has reached out to other Down syndrome affiliates to encourage them to also support cognition research. By contributing to the LuMind RDS Foundation, their members will also be benefactors of this important ongoing research.

DSG strongly encourages their members to participate in the DS-Connect registry. As Amy points out, “If we can populate the registry, researchers will be more likely to focus on Down syndrome research and a cohort will be ready when clinical trials come to fruition.” After families contribute health information, researchers can use that information to identify similarities, differences, and trends among people with Down syndrome. This can lead to exciting new developments in cognition and medical research to benefit those living with the condition.

We feel very fortunate to count the Down Syndrome Guild of Kansas City and Amy Allison as LuMind supporters and partners as we jointly work to improve the lives of those who have Down syndrome.

Thank you Amy Allison and the DSG for 360 support of our mission – through generous donations, helping to raise awareness of the need for cognition research and integral resources such as DS-Connect, as well as encouraging other DSAs to join our cause.

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.

Alan Gard Personal Image

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.

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?

Down Syndrome Cognition Research: THE Most Important Opportunity

by Sarah Wernikoff

Sarah Wernikoff was honored with the Luminary Award at our inaugural recognition gala, the Sky’s the Limit. Sarah chaired the LuMind Foundation Board from 2012-2014 and served as a member of the board for seven years. She presented the following remarks on why LuMind Research Down Syndrome Foundation and Down syndrome cognition research are important to her. Thank you, Sarah, for your continued support and inspiration!

I feel very honored to be acknowledged in this way – particularly at the same event as Dr. Mobley — the original visionary behind this field of research, and Dr. Edgin. It’s only due to their genius, creativity and perseverance that we are all here today. I also want to thank the Whites who had the vision to make this organization possible, and who have done so much for this very important cause over the last decade.  And last, I can’t leave out Carolyn Cronin. The breath of fresh air that is carrying us into the future. Carolyn, thank you for your tireless commitment.

Sarah and Toddler Tate Down syndrome cognition researchIt’s ironic for me to be here in this way with Dr. Mobley, and Patty White, as they are the very two people who I first had contact with 11 years ago soon after my daughter Tate was born in October of 2003.

It’s still hard for me to talk about those early days, …but needless to say learning Tate had Ds was a complete shock to our family. We knew next to nothing about Ds and didn’t know what to expect – all we knew then was that our lives were going to be very different than what we had planned and envisioned.

It was between the shock, and I’ll admit the tears, of those initial few days that my husband Dan and I started thinking about research. What was going on the field of research to help us help assure our daughter would have the very best opportunities in life as possible?  We quickly learned about all of the community, educational, and advocacy resources that had made enormous strides in the past decade or two for people with Ds, and felt very fortunate to benefit from those tremendous efforts and successes……but what about research?

At the time, in 2003, if you went online to search Ds cognition research finding information was like finding a needle in a haystack. So after finding virtually nothing online, Dan and I began to network through Stanford, and Bill — I’m sure you don’t remember this, but I eventually tracked down your contact information and started hounding you (one might even say stalking you, but I will leave those details in the past).  But it was you who put me in touch with Patty who at the time was in the very beginning stages of founding this organization with Jim and the Kafkers in Boston.

So…that’s a long-winded way to tell you all how I got involved, but I tell it for two reasons.Tate Karate

The first is to paint the picture of how far this research has come in the last decade.  Today, in large part due to the work of those in this room, this same Google search results in pages and pages and pages of information and research breakthroughs. It was the goal of the honorees in this room to be a catalyst to cognition research, collaborate with the best and brightest and bring new researchers into the field – and they have done this in an incredibly short amount of time, and on an absolute shoestring budget.

The other reason I share the story is explain how innate and intuitive it was for Dan and I to know that cognition research was THE most important opportunity for our daughter.

When people ask me about my volunteer work and what LuMind is all about, I tell them it supports cognition research for people with Down syndrome. This usually results in blank stares, long pauses and a sense of confusion. Its’ not an easy thing to understand, like cancer research for example.  So I always try to describe it in more familiar terms, like glasses for someone who is visually impaired, or cochlear implants for someone who is hearing impaired.

Tate ChairliftWe are not trying to change anyone — but just turn the dial and move the meter a bit on abilities. The ability to remember. How can you learn if you can’t remember? The ability and speed people with Ds process information. The ability to communicate, and ability to articulate thoughts and feelings.  It’s hard to put it into words, and in some ways you need to know someone with Ds well to understand it, but even small improvements in these areas will have a huge impact. The small improvements will impact the work they do at school, the richness of their friendships, the type of job they will have one day.  It will have a very direct impact on each child’s overall independence as adults, and even more importantly their risk of developing early onset Alzheimer’s disease.

Dan and I are convinced the research, whether results are subtle or significant, will have an enormous impact on Tate’s future. Yes, the years of weekly PT, OT, speech, socials skills therapy, and of course educational support we all give our kids is fundamental to their success, but cognition research, in my book has equal footing — and the potential to be a game changer to the futures of all those with Ds.

So it feels a little awkward to be here receiving an award for this work that is obviously very self-serving. It truly has been a labor of love.

Tate with SiblingsAnd in case you were wondering, I thought I’d close by sharing that we were actually right in 2003 that our lives were going to be different. But what we didn’t know then, was what an overwhelmingly positive different it would be. Tate is the most fun, most loving and sincerely kind person we know. She is the nucleus of our family and it has been an absolute privilege to be her parents. Our goal, as with all of our kids, is for her to live her life to her greatest potential, and I thank all of you in this room for helping us do that.