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.

My Giving Story: We Need Research AND Advocacy

 – Stephanie Hartman shared this story at our inaugural Sky’s the Limit Awards Gala where we honored Dr. Jamie Edgin, Dr. William Mobley, Sarah Wernikoff and Jim and Patty White. Thank you, Stephanie, for supporting LuMind RDS Foundation and for sharing your personal reasons for supporting Down syndrome cognition research. 

By Stephanie Hartman

Stephanie Hartman with TaylorEven from a young age, I knew that I was meant to be a mother. I could see through the experience of others and particularly with the closeness within my family growing up, that good parenting is hard work, but immeasurably rewarding and the most important job to be done.

I became pregnant just before turning 34. My husband Ryan and I learned that our baby boy had heart issues that would require heart surgery in early childhood. We were told that these heart issues were commonly found in children born with Down syndrome, so that was a possibility for our son.

For many reasons, including this, my doctor strongly encouraged that I get an amniocentesis. At that time, it was the only method to determine genetic variances with any certainty.

I was informed that conducting the amniocentesis itself presented a slight risk to my baby. The information would have been helpful for preparation. However, I was unwilling to take the risk.

I viewed this differently than other choices that just affected me. This was a tiny unborn person who only had me to count on to keep him safe and healthy. Also, due to strongly held personal beliefs, I knew that regardless of the results of any test, I was going to give birth to and care for and unconditionally love any child growing inside my body.

In utero, the doctors took measurements of my son’s head, torso, arms and legs. We were told that that our child’s proportions seemed typical and didn’t indicate Down syndrome.

That was enough for us to believe what we thought was ‘’best case” scenario, where our child would have the certain heart defects and require surgery but would otherwise be typical. So we put our heads in the sand and continued our dreams for the future of our family.

Not long after midnight on February 26, 2008, at University Medical Center in Tucson, Taylor Glen Hartman was born.  He was tiny, under six pounds….not the nine pounds that had been predicted. Many things were not as predicted.

Soon after the umbilical cord was cut, I could hear the people in the room whispering to each other. I had never had a baby before but I could tell that something was not right. UMC is a teaching hospital, so the room was filled with interns and residents. After cleaning the baby, one of the doctors explained that our son had features consistent with Down syndrome.

What a strange experience. We shouldn’t have been, but we were stunned.

I was trying to simultaneously process this information that would change the course of my life and manage the political correctness of my reaction, given the room full of strangers witnessing this very personal moment.

The hours and days that followed were the most confusing and challenging I had ever experienced.

The instant and beautiful bond between mother and child shown in the movies was not my experience. I understood though that this tiny gift from God in unexpected wrapping needed me. So through the tears, I snuggled him, I sang to him and I nursed him like our lives and our relationship depended on it. It did.

Meanwhile, Ryan left the hospital. It seemed like he was never coming back.

He finally returned with a gift of tulips and a story about a trip to Holland. He also had information. While I was contemplating how to best support the social and educational components of the future advocacy of our child, Ryan gained comfort, strength and direction, reading the work of Dr. Mobley and others. He quickly absorbed so much about Down syndrome, the details of recent advances, and research underway that would maximize our son’s intellectual capabilities.

Thank goodness for Taylor, he has both of us. My narrow focus on advocacy for acceptance and inclusion would have prevented me from even considering medical cognitive interventions. I feared that in so doing, I was in someway rejecting Taylor or trying to cure his Down syndrome like a sickness.

Taylor Hartman with BrothersWe love our little rascal. Ds is part of what makes him who he is. Ryan and I wouldn’t take away the Down syndrome even if we could. But I now understand that cognition research is about maximizing the potential of individuals living with Down syndrome, not attempting to cure them of it. It is about helping our loved ones to:

  • think more clearly,
  • rest more peacefully,
  • express themselves fully, and
  • be as independent as possible.

Isn’t that what any loving parent wants for his or her child?

If Ryan hadn’t come across the valuable work funded by the LuMind Research Down Syndrome Foundation, we may have focused our attention on advocacy, at the exclusion of research.

Taylor would grow to the age that I am today and suffer from the cognitive degeneration that occurs in Alzheimer’s. If later I learned that I could have taken simple actions today to prevent such an onset, I would never forgive myself.

LuMind Research Down Syndrome Foundation is funding research that is very real, tangible, and applicable sooner than later – for children and adults with Down syndrome.

  • Dr. Jamie Edgin’s sleep and cognition studies provide insight and possible solutions to the sleep-related issues faced by many people with Down syndrome – and their parents!
  • Dr. William Mobley and others are working to help Taylor and others living with Down syndrome to retain the cognitive gains they’ve made through their lives.
  • And thanks to the recent revelation of the connection between Down syndrome and Alzheimer’s, both communities can benefit from the research synergy.  

I know there are many causes looking for answers from research, but unlike federal funding for conditions such as Cystic Fibrosis at over $2500 per affected person, Down syndrome research only receives $60 per person from the National Institutes of Health.

Thanks to the vision of people like Jim and Patty White and the dedicated volunteers, like Sarah Wernikoff, who have supported private funding for cognition research, there have been many recent amazing breakthroughs.

But, we still have so much more work to do. There is fantastic, groundbreaking research waiting to be conducted by these and other distinguished researchers and rising stars. The only barrier today is lack of funding.

Now more than ever I believe that good parenting is the most important job to be done.

I urge you to be as generous as possible to help ignite new discoveries and propel this important research forward. Please join me in one of the most important jobs we can have as parents – supporting the futures of our loved ones with Down syndrome by funding these research advances.

The Sky’s the Limit for Down Syndrome Research!

Almost 100 people enjoyed the events during our “Sky’s the Limit” Awards weekend – a VIP reception, a research presentation by Dr. Harpold, Dr. Mobley, and Dr. Edgin, and of course, the inaugural Awards Gala on Saturday night.

Please enjoy our staff’s casual and candid photos of the Awards gala. We will have more photos and stories to share throughout the week. Thank you to everyone who participated, planned, or supported the event.

A special thank you to photographer Pavel Verbovski for capturing all the wonderful moments from the event. For those wishing to view and purchase professional images from the Gala, please visit the photographer’s website.

There’s still time to show your support with a donation in honor or one of our honorees – Dr. William Mobley, Dr. Jamie Edgin, Sarah Wernikoff, and Jim and Patty White. Select “Sky’s the Limit” when you make a donation and support our inaugural honorees.

This slideshow requires JavaScript.

Recognizing the Pioneers in Down Syndrome Research – 2015 Awards Gala

STL Event LogoWe are so excited to be hosting our very first awards gala – The Sky’s the Limit – in Seattle on May 2, 2015.

We selected the Sky’s the Limit theme to represent the hope we feel. Thanks to your support over these 11 years, research that was once too complex to even consider is now experiencing tremendous breakthroughs. There are more discoveries, more exceptional, young researchers interested in pursuing careers in Down syndrome research, and interest from pharmaceutical firms to develop drug therapies.

Our inaugural event will honor five exceptional people who helped advance Down syndrome research. On Saturday evening, we will be presenting the following awards:

  • Founders’ Award – Presented to Jim White and Patty O’Brien White on behalf of all those who were a part of the creation of the organization. This is a legacy award to be presented in 2016 and beyond to those who make an impact to the advancement of research.
  • Dr. David Cox Rising Star Award – Presented to Dr. Jamie Edgin, University of Arizona
  • Dr. William Cohen Researcher of Distinction Award – Presented to Dr. William Mobley, University of California, San Diego
  • Luminary Award – Presented to Sarah Wernikoff, former Chairperson, LuMind Research Down Syndrome Foundation

About our Honorees:

Jamie Edgin websiteJamie Edgin, PhD, is an Assistant Professor in the Department of Psychology and the Sonoran UCEDD at the University of Arizona. Her research centers on studies of sleep and learning in Down syndrome, and she has been instrumental in devising new methods to measure cognition in those with Ds. Dr. Edgin serves on a number of community boards, including her service on the State of Arizona Developmental Disabilities Planning Council.

Dr. William Mobley, MD, PhD, is Distinguished Professor and Chair of the Department of Neurosciences at University of California, San Diego. He also serves as executive director of UCSD’s Down Syndrome Center for Research and Treatment. His research emphasis on the neurobiology of Down syndrome has brought new insights into Down syndrome, including possible therapies to improve cognition and unraveling the connections between Down syndrome and Alzheimer’s disease.

Sarah LinkedInSarah Wernikoff served as LuMind Board Chair from 2012-2014 and was a member of the LuMind board for 7 years. Her professional background includes over 15 years experience in ecommerce general business management, marketing strategy and planning, merchandising, and management consulting. Sarah has three children including an 11 year old daughter who has Down syndrome.

white_large croppedJim White and Patty Ann O’Brien White are accepting this award on behalf of all of the people who were a part of the creation of the organization eleven years ago. Jim is a Managing Director with Sutter Hill Ventures and Patty is a marketing consultant at GSVlabs. The Whites have four children, including a daughter with Down syndrome.

If you would like to support the event, we are accepting donations in honor of the award recipients or for the event. Please learn more on our event page.

A big thank you to Confluence Health for their sponsorship of the Gala.

Affiliate Profile: Thank You Buddy Walk of South Plainfield

By Veronica Fratta

Buddy Walk S PlanfieldMichele Both is a busy mom of four beautiful children aged 15, 12, 9, and 6. Yet once a year, she finds the time to organize a walk that mobilizes 650 people to support individuals with Down syndrome.

Michele’s second child, Kyle, was born with Down syndrome. That October, Michele and family attended their first Buddy Walk. As they drove home from the walk, Michele mused about starting a walk closer to home. The very next year, Michele did just that. With help from friends and family, she put on the first Buddy Walk of South Plainfield, New Jersey. About 250 people joined her to show their support.South Plainfield Buddy Walk Picture

Now in its 12th year, the South Plainfield Buddy Walk brings together friends and families of individuals with Down syndrome. Boy and Girl Scouts and youth from various area schools join them to help with the event, which features not just the walk but lunch, games, raffles, and a DJ to pump up the energy.

Michele’s motivation is to raise awareness and promote acceptance of people with Down syndrome as well as raise funds for various Down syndrome organizations because Michele wants to put the money to good use. As a recipient of the Buddy Walk of South Plainfield’s generosity, we at the LuMind Research Down Syndrome Foundation are so grateful for their invaluable contributions to our research efforts!  We share a common mission of improving the lives of individuals with Down syndrome and we appreciate their support.

The next Buddy Walk of South Plainfield takes place on October 3, 2015, at Putnam Park in South Plainfield, New Jersey.  Please go to www.buddywalkofsouthplainfield.com for more information.

Run for Research: Chicago Marathon

research down syndrome, RDS Runners, Lottery registration for the Oct. 11 Bank of America Chicago Marathon, one of the world’s premier running events, ends on Tuesday, April 21. 

LuMind Research Down Syndrome has charity entries. More than 40,000 participants run from Grant Park, through the Loop, Old Town, Wrigleyville, Lincoln Park, through Little Italy, Chinatown, and Bronzeville, before ending up again in Grant Park. It is a flat course, cheering crowds line every mile, and the post race dining/partying opportunities and atmosphere are second to none.

Join us today!

Don’t take any chances… sign up with LuMind RDS Runners now. Reach us at rdsrunners@researchds.org for more information. LuMind RDS Runners is the nation’s charity running program that has raised hundreds of thousands of dollars to support Down syndrome cognition research.

Share this with anyone who has said: “Some day, I want to run the Chicago Marathon,” or who has said, “What can I do to support research that has the potential to identify therapies that will enhance life opportunities for persons with Down syndrome?” Let’s do this.

Lara Font_Chicago Marathon_1 cropped Team Pritchard_Chicago Marathon_1

Alexander’s Angels: Supporting Every Person in the World with Down Syndrome

By Veronica Fratta

Esther Gómez-Nieto greeting attendees of a WDSD celebration at the Long Island Aquarium.

Esther Gómez-Nieto (in red) greeting attendees of a WDSD celebration at the Long Island Aquarium.

We hear so much about how far a mother will go to help her child, but how about a grandmother?  Well, Esther Gómez-Nieto organized a walk, started an art show, educated college students, started a foundation, and raised hundreds of thousands of dollars—all to support her grandson Alexander and others with Down syndrome!

It all started in 2001, when Esther travelled to Arizona for the birth of her grandson. But shortly after her daughter-in-law had Alexander, the doctors determined that he had Down syndrome.  Esther had never had any contact with individuals with Down syndrome, so she immediately set out to learn more.

As she was researching Down syndrome, she came upon the Down Syndrome Research and Treatment Foundation (the LuMind Research Down Syndrome Foundation’s original name).  Esther was able to hear a talk by Dr. William Mobley, currently the Chair of the Department of Neurosciences at UCSD and a LuMind-funded researcher.  In Esther’s own words, she was “blown away by him” and knew that she had to help fund his important work on cognition.

In the years since Alexander’s birth, Esther has been hard at work doing just that.  She started by organizing the first Buddy Walk® on Long Island.  That Buddy Walk® has been so successful that, in 2014, there were 2,000 walkers and they raised over $100,000 to fund local organizations and services, national advocacy organizations, and Down syndrome cognition research.

But the Buddy Walk® wasn’t enough for Esther!  She realized she needed help and found a community of like-minded individuals.  In 2010, they became a 501(c)(3) organization called “Alexander’s Angels, Inc.”  More than 30 people help Alexander’s Angels, Inc. as board members, officers, and members of various committees.

All those hands come in handy as Alexander’s Angels has gone on to organize an exhibition, DOWNrightART, featuring the artwork of individuals with Down syndrome, and panel presentations on Down syndrome at local colleges and businesses.

These activities have allowed Alexander’s Angels to contribute very generously to the LuMind Foundation’s mission of advancing cognition research for people living with Down syndrome.  When asked why she made the decision early on to emphasize research, Esther Gómez-Nieto says that she realized that when you support research, you’re aren’t just supporting your child, your grandchild, or your local community.  You are supporting every person with Down syndrome in the world, because discoveries made in the lab will impact people with Down syndrome everywhere.

We at LuMind Research Down Syndrome are so grateful for Esther and her wonderful organization, Alexander’s Angels.  Thank you for your generous support of our common mission to fund cognitive research to help people with Down syndrome lead more productive and independent lives.

To learn more about Alexander’s Angels, you can go to their website at http://www.alexandersangels.org.