Scientific Advisory Board Meeting – February 2015

The core of the LuMind Foundation’s successful research program is our Scientific Advisory Board (SAB), comprised of the brightest minds in research across disciplines and from around the world. Lead by our Chief Scientific Officer, Dr. Michael Harpold, the SAB met in person in mid-February to guide the organization’s mission to fund the most promising lines of discovery.

“Thank you to all the members of the LuMind SAB for volunteering their time from their very full schedules to attend the SAB meeting,” said Dr. Harpold. “We value their thoughtful expert perspectives and contributions in reviewing the progress of the current LuMind-supported research and strategic research directions to further advance and accelerate progress.”

The SAB continues to be enthusiastically unified that the LuMind Foundation Research strategy, program, and grants continue to be remarkably successful and transformative for Down syndrome cognition research and its potential for creating significant and meaningful new opportunities for children and adults with Down syndrome.

The SAB meeting and discussions provide a foundation for the next steps in further assessing research projects and developing recommendations for the next new 2015-2016 LuMind Foundation Research Grants.

Truly heartfelt thanks and appreciation for each of the SAB members for their continued dedication to working with the LuMind Foundation to continue to advance critical, influential and game-changing new Down syndrome cognition research.

Members of the SAB are:

• Michael M. Harpold, PhD, Chair – Scientific Advisory Board and Chief Scientific Officer
  LuMind Foundation
• Ronald M. Evans, PhD, Professor and March of Dimes Chair in Molecular and Developmental Biology, Gene Expression Laboratory, Salk Institute for Biological Studies
• Leslie Leinwand, PhD, Professor, Molecular, Cellular and Developmental Biology, University of Colorado
• Lynn Nadel, PhD, Regents’ Professor of Psychology, University of Arizona
• Roger Harper Reeves, PhD, Professor, Department of Physiology, Johns Hopkins University
• André Strydom, MBChB, PhD, Senior Clinical Lecturer, Intellectual Disabilities and Mental Health Sciences Unit, University College London

You can read more about the SAB on our website, including more about our SAB members.

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!

 

Dr. Harpold Quoted in Education Week Articles on Down Syndrome Research

LuMind Foundation’s Chief Scientific Officer, Dr. Michael Harpold, was quoted in an article by Education Week on the NIH Down Syndrome Research report.

In the article, titled “NIH Resets Study Plans for Down Syndrome,” author Sarah Sparks summarizes the seven-year research plan, including discussing a greater focus on students in educational settings.

Dr. Harpold is quoted on the report illustrating an emphasis on improving cognition and the interrelationships between educational approaches and research areas. He also acknowledges that funding for research endeavors is a critical factor in progressing research.

Read more comments by Dr. Harpold on NIH’s research plan and read the entire Education Week article here.

Dr. Harpold was also quoted in another article, also on Education Week, discussing DS-Connect, the Down syndrome registry. Read that article here.

 

 

 

DSG Renews Commitment to Ds Cognition Research

We are so happy to announce a $10,000 gift from the Down Syndrome Guild of Greater Kansas City.

“DSG is a longtime supporter of the LuMind Foundation as we know funding Down syndrome cognition research could provide our members a better quality of life and the opportunity to achieve their full potential,” explained Amy Allison, Executive Director of DSG and a LuMind Foundation Board Member. “We are grateful for LuMind’s commitment to driving critical cognition research as we know it will lead to a brighter future.”

DSG is an engaged member of the Ds community, participating in awareness and educational events that stretch well beyond the Kansas City area, including the amazing film “Just Like You.”  We are proud to have such wonderful friends!

Thank you Amy and all the visionary members of DSG!

Harnessing the Momentum of Down Syndrome Cognition Research

by Ryan Hartman, Chairman,  LuMind Research Down Syndrome Foundation Board of Directors

Did you know if we had the funding, we could award $20 million in Down syndrome cognition research grants tomorrow?

One of the most interesting things I’ve learned since joining LuMind Foundation is the wealth of possibilities on the horizon. I’m a businessman with a background in aerospace, and I therefore appreciate the power of momentum and the efficient use of energy to keep making progress. Thanks to my son Taylor who has Down syndrome, I also have a personal interest in wanting to propel Ds research forward at mach speeds.

Ten years ago, there was little research progress on Ds. Researchers interested in unlocking the puzzle of Down syndrome were essentially forced to go into other areas because it was near impossible to secure funding for Ds discovery. Without funding, those researchers lent their talents to other efforts.

Now thanks to the efforts of the LuMind Foundation founders, donors, and the Ds community, there’s been a shift. Your support has been the catalyst and new researchers are entering the field and making exciting discoveries. We see proof each year at LuMind Foundation when our Scientific Advisory Board receives increasingly more proposals than we can fund with so many promising lines of discovery.

The momentum is exciting, but without additional funding we’re leaving research on the table. 

The LuMind Foundation has been successful in their approach to evaluating and selecting research grants and we have established awesome momentum. Thanks to you, four clinical trials are running based on discoveries ignited in one of our funded labs. We are proud of our results and the momentum we have generated, but we see so much more on the horizon. As within aerospace, momentum should be harnessed and coupled with propelling energy to gain more momentum to make further progress.

LuMind RDS Foundation plans to increase our propelling energy by amping up our funding while remaining true to our proven approach. What additional Ds research could we fund if we had the money? There are 20 million possibilities.

Leaving research on the table means there are discoveries, clinical trials, and drug therapeutics to improve cognition unfunded and undiscovered. Without a funding catalyst, the next great breakthrough could be delayed or remain undiscovered. Without a funding to propel us forward, we lose the momentum we have created.

I invest in cognition research for my son, but also because I see the possibilities. The ideas are there, the talent is there, we just need to keep fueling the momentum.

Please consider joining me in a year-end donation to LuMind RDS Foundation and cognition research.

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.

DS-Connect® Challenge Impact: A Look at the Map

At LuMind Foundation, we bring light to the science of Down syndrome cognition research. Thanks to to the amazing support for LuMind Foundation’s DS-Connect® Challenge, hundreds of you brought a glow to the DS-Connect® map!

The DS-Connect® Map on November 12, 2014 (courtesy NIH).

On the map of the major metropolitan areas where aggregate, de-identified information is displayed, six areas now glow bright red. A big shout-out to our friends in Texas who shifted from yellow to red, indicating more than 100 people support research.

Don’t see your area glowing red or yellow? That’s because the registry protects your privacy and is only displaying the major metropolitan areas. Your information is still there!

“We are thrilled with the response to the LuMind Challenge and the positive impact that it has had on increasing the number of registrants on DS-Connect®. We are grateful for all the families who have signed up for the registry and hope that they will continue to support research in Down syndrome. This resource will help connect families with the research that matters to them,” said Dr. Melissa A. Parisi, Chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH).

Thank you to the NIH and all the people who joined DS-Connect® in October, or earlier or just helped to spread the word!

Nothing but Net – and Research

Basketball + Fourth of July + air conditioning = a great way to raise money for Down syndrome cognition research!

Our friend and Board Member Anthony Providenti hosts a Long Island tradition, a basketball tournament to benefit the LuMind Foundation. The event raised $4000 and the spirits of all of us here at LuMind –  thanks to everyone who played, cheered and donated.

Here’s an article about the event:

Young and Hoary Battled at Sportime – Tournament benefited Down syndrome foundation

Illuminating Cognition Research “With Glow Sticks and Energy”

We recently received a message from Katie Cloutier, a junior at Black River High School in Ludlow, Vermont. Katie (on the right in the photo) held a fun-run fundraising event to support LuMind Foundation and raised almost $600 to support cognition development research. Katie, who is a distance runner, has a friend with Down syndrome and was inspired to create an event that honored her friend and her love of running.

“I chose to donate to your foundation because a close friend of mine has Down Syndrome. In my leisure time I enjoy running and have been a member of my school’s cross-country running team, so the event that I organized incorporated each of these interests, with the benefit of raising funds for beneficial research!” she explained. “I decided to host a Glow-in-the-Dark 5K run/walk on May 10th. Members of the community and people from the surrounding area came to enjoy a night run, and we lit up the village with glow sticks and energy!”

Thank you, Katie – you make us glow with happiness!

For a person with Down syndrome, quality of life equals independence and inclusion

LuMind Foundation is dedicated to making this a reality for the hundreds of thousands affected by finding treatments to improve cognition including learning, memory and speech for people with Down syndrome. We are the leading private source of funding in the United States for Down syndrome cognition research. Read about our results.

We operate under the conviction that anything is possible when innovation, creativity, and motivation are applied toward an imperative end result. And for us that result will be a better quality of life for the over 250,000 people with Down syndrome through improved memory, learning, and speech.

This isn’t just a distant dream — it’s a near-term reality. Through the funding we provide to the institutions and talent that are pushing the boundaries of cognition research, a more welcoming world lies ahead for people with Down syndrome. We are honored to be opening the door.