Run – Don’t Walk! Sign up for the 2016 United Airlines NYC Half on March 20th!

Interested in running the United Airlines NYC Half on March 20th, 2016, but didn’t get accepted through the lottery?  Don’t worry – we have bibs!  Guarantee your spot in the 2016 United Airlines NYC Half today by signing up to run with us today.

In order to commit to one of the ten charity spots that we have been offered for this year’s event, please visit our NYC Half Marathon page and follow the instructions provided.

We’ll need you to sign a commitment waiver and send it back to Kate Dochelli at kdochelli@lumindrds.org.  By signing this waiver, you are agreeing to raise the $1,000 fundraising minimum set forth by the NYRR for all official charity runners participating in the race.  Once we receive your signed waiver, we’ll add you to our list and you’ll be notified with instructions to register for the race. You will be responsible for covering your own registration fee. Please be advised that spots will be filled out on a first-come, first-served basis, so please do get your signed waiver back to us as soon as possible.

One last important piece of information: this year, we are pleased to announce that we are offering all of the NYC Half runners representing LuMind RDS the opportunity to take advantage of the NYRR’s Virtual Trainer program (at no cost to you).  The program is a fully customizable day-to-day training program that is specifically designed around each runners ability.  Virtual Trainer also will update and modify to each runners current performance within the 10 week period so that they will be training for their best possible performance.  Runners will also have access to a forum where they can post questions for NYRR’s coaches to answer. For more information about the NYRR Virtual Trainer program, visit the NYRR Virtual Trainer site and sign up for the “regular” training program.

If you are interested in using the Virtual Trainer program, please let Kate know no later than December 14^th!

Run – don’t walk – and sign up with us today!  What a great way to celebrate World Down Syndrome Day and raise money for vital Down syndrome cognition research.

We also invite you to pass this information along to anyone you know who may be interested in a spot for the race and wants to Race for the eXtraordinary!  

LuMind RDS Welcomes Three New Board Members

At our October 28, 2015 Board meeting, the LuMind RDS Board voted in three new members. Please join us in welcoming Virginia Bennett Flynn, Patrick Kannon, and Christopher Lis.

Virginia Bennett Flynn joins us from Massachusetts, but brings an international perspective to her Board role thanks to her extensive resume of working abroad and with global firms. Virginia will be vital part of the team propelling LuMind RDS’s strategic plan to a successful reality. We are grateful to Virginia will be lending her expertise in many areas, including participating on our Audit Committee.

Patrick Kannon has been a longtime supporter and committee member with LuMind RDS. We are so pleased to have Patrick join the Board and help guide our financial management. For the past five years, Patrick and his family have also hosted the very successful Ashley Rose golf tournament outside DC to benefit LuMind RDS.

Christopher Lis brings a wealth of knowledge and expertise to the LuMind RDS Board. Christopher joins us from the Chicago area where he will combine his scientific education with his vast experience serving on Boards. He also enjoys the full support of his family, including son Hayden Lis who started a fundraising page in support of his brother Collin, who has Down syndrome.

We look forward to learning more about all of our Board members and seeing how their talents help propel LuMind RDS and cognition research to the next level of cognition therapy breakthroughs!

LuMind RDS Runners Leyda and Chad Simon Profiled

Chad (wearing 31442) and Leyda (40770) are front and center for this photo from the Chicago Marathon on October 11, 2016. They are posing with their fellow LuMind RDS Runners at the pasta dinner the night before the race.

Chad Simon is a student at Fort Hays State University – and a long-time runner for the LuMind RDS Runners program. Chad runs along along with his wife Leyda in support of their daughter Ashylnn who has Ds.

Chad and Leyda were profiled in an article in the Fort Hays State University news outlining their commitment to the Runners program.

We are so proud to have Chad and Leyda on our team! Enjoy the article. 

#Race4eXtraordinary

Cognition Goes Global – LuMind RDS Joins Down Syndrome International

LuMind Research Down Syndrome Foundation is proud to announce we’ve joined Down Syndrome International (DSi) as an affiliate member.

DSi is a global network of Down syndrome organizations representing 131 countries around the world. They’re aiming to channel the expertise and experience existing in many countries and use that knowledge to benefit other countries, especially those in the developing world, to better opportunities for people with Down syndrome.

LuMind RDS’s partnership with DSi took off with a burst of speed. In addition to being part of an international network of Down syndrome organizations, LuMind RDS is collaborating with DSi on events such as a meet and greet with Formula 1 legend and Down syndrome advocate Damon Hill in Austin, Texas and promotion of the LuMind RDS Runners program.

“LuMind RDS brings access to information on cognition research in Down syndrome, including breakthroughs related to aging and cognition, which is very important to the worldwide community,” said Andrew Boys, Director of DSi. “DSi was impressed with what LuMind RDS has accomplished and happy to support the research.”

LuMind RDS is proud of pushing the needle on Down syndrome cognition research and supporting the spread of best practices and awareness by joining DSi. Recently DSi has worked on projects providing information, expertise and training in Tajikistan and Oman and this year invited organizations from Albania, Nepal, Bangladesh, Botswana, Vietnam, Uganda, Nigeria, Bhutan and Mauritius to take part in a program at the World Down Syndrome Congress in Chennai, India. Boys said their efforts focus on producing new information resources on medical care, development and education and employment, independent living and participation in society. DSi then looks to build the capacity of national Down syndrome organizations and provide training so that they can successfully advocate for people with Down syndrome in their countries.

“The countries with established programs are critical to building international consensus on some of these issues,” said Boys. “Many other countries are in very desperate situations, with people with Down syndrome facing prejudice and neglect. It’s critical to share knowledge, education and best practices and give fledgling groups in these countries the tools and the confidence to improve the situation.”

Founded in 1993, DSi may have a global reach, but their current footprint echoes the beginnings of Down syndrome. DSi is based in Teddington, England at the former home of pioneering Victorian Physician Dr. John Langdon Down, after whom Down syndrome is named.

Learn more about the great work DSi is doing around the world and look for more events and opportunities for collaboration between DSi and LuMind RDS.

Celebrating 10 Years of ROMP

Thank you to everyone who played, smiled, laughed and donated in celebration of 10 years of the ROMP on October 11 in NYC. We’ll be adding more pictures as we receive them and can’t wait to see the video of the event! (It’s here! Thank you Keith Brady!)

Romp For Research 2015 from Keith Brady Media on Vimeo.

So far, more than $167,000 has been raised this year with donations rolling in daily! If we can reach $200,000, the ROMP will have contributed more than $2 million dollars to Down syndrome cognition research through its decade of celebration. Let’s reach that milestone!

If you couldn’t make it, but still want to show your appreciation of the great work of the ROMP organizers, consider making a donation to the event. We’ll be continuing to accept your support until the end of the year.

A big heartfelt THANK YOU to Anthony Providenti, Mary Costello-Lazare, and Steve Lazare, as well as to the entire ROMP committee.

Warmth and Enthusiasm at the Alexander’s Angels Buddy Walk

We were so happy to represent cognition research at the 9th Annual Alexander’s Angels Buddy Walk on October 10, 2015 on Long Island. The sun was shining, kids were laughing, and a good time was had by all in celebration of Down syndrome Awareness Month.

Our VP of Development, Anne Tippett, was on hand to meet people, take photos, and spread the word about Down syndrome cognition research. The warmth and enthusiasm of the crowd and from Esther Gómez-Nieto was contagious and so inspiring!

We have so appreciated the tremendous support from the wonderful families of Alexander’s Angels over the past several years. Please learn more about this amazing organization in this past post on the Plus15 Blog.

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!

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

By 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.

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.

• Read more about the Hundred Hole Hike at www.hundredholehike.com and you can see my Hike site at http://hundredholehike.com/golfers/alan-gard where you can make a pledge.
• Make a flat donation or submit your pledged donations on the LuMind RDS Hundred Hole Hike event page.
• Start your own fundraising campaign! Come on – it’s fun to play 100 holes of golf in one day! Sign up today on the LuMind RDS Hundred Hole Hike event page.

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.

It’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.

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.

We 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.

And 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.