Sky’s the Limit Honorees Announced

LuMind Research Down Syndrome Foundation is happy to announce the honorees for the Second Annual Sky’s the Limit Awards Gala. Sky’s the Limit recognizes the best and brightest who have helped propel Down syndrome cognition research, celebrating their successes at a Gala on May 21, 2016 in Seattle, Washington.

Founders’ Award: Awarded to an individual or organization whose work has left a legacy in the advancement of Ds cognition research.

Honoree: Hayes Mechanical for their continued and growing golf events in support of Down syndrome cognition research. Terry Ancel, president of Hayes Mechanical will be accepting the award on behalf of the firm.

Dr. David Cox Rising Star Award: In recognition of an up and coming researcher.

Honoree: Dr. Michael Rafii, University of California, San Diego, for his work on the first clinical trial just started to study Alzheimer’s in adults with Ds.

Dr. William Cohen Researcher of Distinction Award: Awarded to an established researcher who has made a significant contribution to Ds research, produces research that is innovative, relevant and timely and collaborates with others both as researcher and mentor to advance research.

Honoree: Dr. Roger Reeves, Johns Hopkins University, for his strong research work, representing the discipline, and bringing several new researchers in the field through his consortium project.

Luminary Award: Presented to an outstanding volunteer(s) who consistently excels in their efforts with proven results.

Honorees: Steve Lazare,  Mary Costello Lazare, and Anthony Providenti for a decade of work on the ROMP for Research in New York, raising almost $2 million for cognition research.

Please join us in congratulating the honorees and plan to join us to celebrate their wonderful achievements on May 21.

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.

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!

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?

Recognizing the Pioneers in Down Syndrome Research – 2015 Awards Gala

We 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, 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 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.

Jim 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.

Run for Research: Chicago Marathon

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.

First Lady Mary Pat Christie Lights the Way for Ds Cognition Research

Thank you New Jersey First Lady Mary Pat Christie for championing the “Light the Way” program! Twenty-nine states and territories to date will be participating in Mrs. Christie’s campaign by showing support for Down syndrome cognition research on March 21, 2015, World Down Syndrome Day.

From Governor Christie’s office:

First Lady Mary Pat Christie Spearheads “Light the Way” Initiative with First Spouses from Across the Nation to Bring Greater Awareness of Down Syndrome Cognition Research

Drumthwacket to Illuminate in Blue on March 21st to Recognize World Down Syndrome Day

For Immediate Release                                                                Contact: Kevin Roberts
Friday, March 20, 2015                                                                 609-777-2600

Drumthwacket  “Lights the Way” in blue for World Down Syndrome Day.

Trenton, NJ – First Lady Mary Pat Christie is leading a national effort to bring attention to Down syndrome cognition research, a bio-medical initiative targeted at developing drug therapies aimed at improving memory, learning and communication for individuals with Down syndrome. Mrs. Christie is being joined by 28 other First Spouses from around the country who are participating in this year’s “Light the Way” program to help raise awareness in their home states.

Additionally, Governor Christie has proclaimed March 21 as Down Syndrome Day in New Jersey. Later that evening, Drumthwacket, the Governor’s official residence in Princeton, will be illuminated in blue to symbolize Mrs. Christie’s support of Down syndrome cognitive research.

“I am pleased to have so many First Spouses participate in this year’s Light the Way campaign and I sincerely thank them all for lending their support to an effort that not only expands awareness, but helps to empower adults and children with intellectual and developmental disabilities in New Jersey and across the nation,” said First Lady Mary Pat Christie. “The vital research generated through foundations like Research Down Syndrome (RDS) and LuMind are spurring scientific advancements that are giving these individuals greater opportunities to live independent and fulfilling lives that emphasize community, work and self-reliance.”

To date, First Spouses from Alabama, Alaska, Arizona, Colorado, Florida, Hawaii, Idaho, Illinois, Kansas, Kentucky, Louisiana, Maine, Maryland, Mississippi, Montana, Nevada, New Jersey, New Mexico, North Carolina, North Dakota, Pennsylvania, Ohio, South Carolina, Tennessee, Utah, Washington, West Virginia, Wisconsin and Wyoming are participating in this year’s Light the Way initiative.  In Florida, Governor Rick Scott and First Lady Ann Scott declared March 16-20 Down Syndrome Awareness Week and on March 21,  the Florida Governor’s Mansion will be lit in blue.

March 21 is particularly meaningful to the Light the Way campaign because Down syndrome results from the presence of three copies of chromosome 21. Down syndrome is the most common chromosomal disorder, affecting over 400,000 Americans. It occurs in approximately 1 in every 700 births.  Between 2006 and 2010, approximately 1.2 of every 1,000 babies was born with Down syndrome.

The Light the Way campaign will add support to the efforts of non-profit foundations Research Down Syndrome (RDS) and LuMind Foundation to educate and increase awareness and funding for Down syndrome cognition research. Research already funded by the foundations is  making encouraging progress in identifying potential treatments to lessen the impact of Alzheimer’s disease in persons with Down syndrome. Alzheimer’s disease is 3-5 times more likely to occur, at an earlier age of onset, in individuals with Down syndrome.

In the last few years, researchers have made significant progress toward understanding and treating the cognitive issues associated with Down syndrome. This initiative has led to several discoveries and supported the initiation of four clinical trials testing potential drug treatments. These studies now provide the promise of biomedical therapies for improving memory, learning and communication in individuals with Down syndrome, offering the potential for increased life opportunities.

For more information, please visit http://www.researchds.org or http://www.lumindfoundation.org.

 

 

 

Glitter and Glue: NYT Bestselling Author Kelly Corrigan at Down Syndrome Research Fundraising Event

By Nicole Gibbard, Event Organizer, Glitter and Glue, Chicago, February 28, 2015

Last year on Linkedin, one of my favorite authors, Kelly Corrigan, posted a personal challenge to raise $1M for charity as part of her 2015 Glitter and Glue paperback book tour.  I knew immediately she was speaking to me and I couldn’t wait to bring this beloved author to our community while also raising funds for children with Down syndrome.  I couldn’t imagine anything better.

Selecting LuMind Foundation to benefit from Corrigan’s appearance was an easy choice.  My five year-old niece, Mia Wuellner, has Down syndrome.  From the day she was born her loving parents, Sarah and Tom, have worked to give her the best life.  Early on they looked for organizations that would eventually help their daughter lead a more independent life full of every possibility.  This search lead them to the LuMind Foundation.  LuMind works with Stanford University, John Hopkins, Emory University, and others to fund research.  Historically, an underfunded area, there are breakthroughs on the horizon for children like Mia and LuMind is driving the issue. This research is helping to develop drugs to improve cognitive function in individuals with Down syndrome.  Medication that can address the cognitive and behavioral deficits in both adolescents and adults with Down syndrome is currently being explored.  This is music to the ears of Sarah and Tom.

Corrigan is the author of The Middle Place, Lift, and Glitter and Glue.  All three books weave the joy of family and the fragility of life in such a way to make us all laugh and cry – sometimes on the same page.  Her books remind us to pause and embrace the craziness that is life.  Glitter and Glue is a tribute to Corrigan’s complicated relationship with her own mother and best attempts at raising her daughters.  As Kelly’s prose in Glitter and Glue reminds us “time goes only one way, things end, affections wax and wane – I was the sole distributor of the strongest currency they would ever know: maternal love.”

Our family is in this life journey, rooting for Mia to live her life to the fullest. With LuMind’s research breakthroughs, Sarah and Tom’s love will take Mia’s potential even further.

Kelly Corrigan will be appearing at the Glitter and Glue event on February 28, 2015 in St. Charles, Illinois. To purchase tickets, which include a copy of the book Glitter and Glue, visit the ticketing website.

And… THANK YOU NICOLE!

 

Reaffirming our Mission: Down Syndrome Cognition Research

“Neither rain nor snow nor gloom of night …” may belong to the Post Office, but our Board Members braved the cold, snow and ice to focus on our mission and growth measures so we can have an even greater impact on Down syndrome cognition research.

On a very snowy Saturday, January 24, 2015, The LuMind Foundation board members flew in from California, New York, Illinois, and Ohio, and drove from closer locations to attend an in-person Board Meeting in Massachusetts. We want to thank all the Board members – You bring inspiration, vision and energy to the cause of Down syndrome cognition research.

There was plenty of energy at the meeting, as some members met their peers for the first time and others reunited with friends. Our theme was team and members were encouraged to wear their college or professional sports team colors. Although there were some rivalries, we are all on the same team when it comes to our mission: funding cognition research for people with Down syndrome.

In the upcoming months we will be sharing more on the outcome of our Board meeting where we discussed our strategic plan, fundraising events, and the state of the organization. We have big plans, a great team, and thanks to the research you’ve funded, an attainable bright future for all individuals with Down syndrome.

Check out some of the pictures below. See anyone you know?

Research Update at Stanford

(left to right) LuMind Foundation co-founder Jim White, Stanford University’s Dr. Ahmad Salehi , LuMind Executive Director Carolyn Cronin, and Stanford University’s Dr. Craig Heller.

The LuMind Foundation returned to its Bay Area roots on November 2, 2014 with a well-attended research presentation at Stanford University.  More than sixty people filled the room to listen to Drs. Craig Heller and  Ahmad Salehi discuss new developments and achievements in their research. Jim White, one of the founders of what was then known as the Down Syndrome Research and Treatment Foundation, was also on hand to greet participants and talk about their commitment to Down syndrome cognition research.

Jim White, one of LuMind Foundation’s co-founders, addresses the crowd at the event.

Nutrition and sleep were among the topics discussed. Sleep apnea remains a challenge for many individuals with Down syndrome and is tied to a number of health issues, including diabetes, high blood pressure, stroke, and heart problems.

Dr. Salehi also talked about an asthma drug, formoterol, which in large doses has been shown to improve learning and memory in a mouse genetically engineered to mimic Down syndrome in humans by carrying extra copies of genes. At lower doses, this drug is already FDA approved to treat asthma and chronic obstructive pulmonary disease (COPD).

Speakers Dr. Heller (pictured) and Dr. Salehi are both LuMind Foundation-funded researchers.

Because over 70% of individuals with Down syndrome suffer from sleep apnea, it is reasonable to think that respiratory issues are common in this population and therefore treatments that target both cognition and respiratory problems, like formoterol, are especially interesting to researchers.

At the conclusion of the presentation, Dr. Heller led a tour of his lab, which was especially popular with the children in attendance.

The LuMind Foundation remains committed to supporting this and other research to find treatments that will improve memory, speech, and learning in people with Down syndrome.  We would like to thank Drs. Heller and Salehi and Jim White for sharing their insights with us. We also appreciate Sara Wernikoff’s hard work organizing the event. And of course, thank you to everyone who attended the presentation.