NYT: The Truth About Down Syndrome

Two LuMind-funded researchers, Jamie Edgin and Fabian Fernandez,  respond to remarks by biologist Richard Dawkins with a fact-filled Op-Ed in the New York Times on August 28, 2014. Here are some of the facts they present:

  • Children and young adults with Down syndrome have significantly higher “adaptive” skills
  • Recent research suggests that the cognitive impairment that is a hallmark of Down syndrome might eventually be managed by medical interventions
  • Medical interventions to address the higher rate of sleep apnea and its impact on cognitive function in individuals with Down syndrome has the potential to improve developmental outcomes over the course of an individual’s life span
  • With the near universal earlier development of Alzheimer's disease in individuals with Down syndrome, recent and ongoing research progress underscores the hope of providing preventive treatments in those with Down syndrome, and that could benefit everyone

Explore the full statistics and other facts in the full Op-Ed - and join in the happiness. 

National Public Radio Features LuMind-Funded Researchers

Thank you supporters - read how your donations are doing great work at the University of California San Diego.

In a piece titled "People with Down Syndrome are Pioneers in Alzheimer's Research" Drs. Raffi and Mobley are interviewed, along with 39 year old Justin McGowan who has Ds about the research they are conducting on connections between the Down syndrome community and Alzheimer's disease.

Thank you, pioneers!

Shon Christy Joins LuMind Foundation As Newest Board Member

Shon Christy

Shon Christy has been with LuMind Foundation as an active committee member and the Foundation is pleased he accepted a leadership role in the organization.  Christy and his wife Brittany are parents to five beautiful children, including an wonderful, playful son named Beckett who has Down syndrome. Welcome Shon!   Read more...

The Denoble Family Foundation Pledges $100,000 to Support Down Syndrome Cognition Research

With sincere gratitude, we announce a generous $100,000 pledge from The DeNoble Family Foundation. We appreciate their support of our mission to fund Down syndrome cognition research through LuMind Foundation.

It takes all types of support to keep the cognitive development research breakthroughs moving through the investigation pipeline. Large grants from philanthropic organizations help us take leaps, but every donation helps with those very important small steps. Thank you to all our supporters!

LuMind Vice Chairman Ryan Hartman Named President and CEO of Insitu

Ryan Hartman, LuMind Foundation's incoming Board Chairman, has been named as president and CEO of Insitu, a Boeing company. In the announcement of his new position, Boeing acknowledged Hartman's track record of advancing research and engineering, coupled with strong management skills. We are so happy to have those skills be part of the LuMind Foundation Board of Directors. You can read more about Ryan's new role with Insitu/Boeing, on the company website.

Congratulations, Ryan - and we're glad to have you on our team!


A Message from LuMind Foundation's Executive Director, Carolyn Cronin

Hello Friends,

I am sending a letter via mail or email to our supporters, past and present, to tell you of some exciting news and to thank you for your continued financial support to help people with Down syndrome lead more active and independent lives through investment in cognition research. Your donations fund endeavors at leading research institutions such as Johns Hopkins University, Stanford University, and University of California – San Diego.

The letter I am sending expresses my hope you will be inspired to renew your support of our mission and make a donation.

Wils VBRecently I met Wils, a 23 year-old college graduate with Down syndrome. When asked why cognition research is important to him, Wils responded, “I want to drive cars, I want to live in my own house, be in charge of my own office because I am a good leader and ambassador. If I could remember things more and be smarter to make good healthy decisions, I could do that stuff faster. That would make me happy.”

There’s no doubt Wils has the determination to achieve his goals. The key question is “when” can research help him?

“Faster.” Thanks to compassionate donors like you, the promise of cognition research is closer for Wils and people of all ages with Down syndrome. You’ve helped fund groundbreaking research leading to nine new drug targets and three clinical trials. We are so grateful for your support, but there is more to be done.

Right now, your donation is accelerating exciting discoveries that mean:

  • Independence: A 15% improvement in IQ for most people with Down syndrome can mean the difference between living a more independent life – or not.
  • Reality: This 15% improvement is closer than ever with three drug compounds being tested for efficacy in human clinical trials at sites around the world.
  • Opening Doors: The LuMind Foundation was a driving force in raising the private support necessary to get these compounds into clinical trials since Down syndrome research is dramatically underfunded by the NIH, with other developmental disabilities receiving 5x more funding on a per person basis.
  • Looking Ahead: Researchers supported by the LuMind Foundation are unraveling the connections between Down syndrome and Alzheimer’s disease. Many people with Ds begin showing signs of Alzheimer’s as early as 40 years old. The research you support will help adults with Ds keep the ground they’ve worked so hard to gain.

In the coming year, we have committed more than $1.2M in Down syndrome cognition research grants to leading research universities. Please consider working together to continue LuMind Foundation’s substantial investment in multidisciplinary, collaborative research.

Now for the exciting news: We have received a generous challenge gift and all gifts of $1,000 and above will be matched 1:1 - doubling your impact in this urgent drive to deliver improved cognition.

Every gift is appreciated. More than 98% of our funding comes from individuals like you and we need your help to keep breakthroughs coming faster! With you as a partner, people with Down syndrome have confidence in a future of increased opportunity thanks to the research we underwrite. And we can continue this essential work, thanks entirely to you.




UCSD Study Unraveling the Complexities between Down Syndrome and Alzheimer's Disease

Our friends at University of California, San Diego are helping to unravel the complexities of Down syndrome and Alzheimer's disease. A news report from WFMZ in San Diego refers to a three-year pilot project involving a relatively small set of individuals with Down syndrome, like the impressive Jonathan Shirley.

Dr. Mike Rafii, the principal investigator on this pilot Down Syndrome Biomarker Initiative (DSBI) and his research colleagues at UCSD, are investigating the similarities between the brains of aging people with Down syndrome and those with Alzheimer's disease, both developing buildup of characteristic amyloid plaques. Individuals with Down syndrome develop these amyloid plaques earlier by the age of 40.

LuMind Foundation's Chief Scientific Officer, Dr. Michael Harpold, is a member of the DSBI steering committee and is collaborating with Dr. Rafii and others on developing a larger private-public partnership DSBI study. That program is currently in the planning and development stage. To see the news segment in full and watch a video of Jonathan Shirley, please click here.

Making Connections: Down Syndrome Cognition Research and Alzheimer's Disease

Want to learn more about the connections research is discovering between Down syndrome and Alzheimer's disease? Read how LuMind funded researchers are investigating early onset Alzheimer's disease in people with Down syndrome and how that research may benefit the greater Alzheimer's community. Learn more.



About Our New Name


In celebration of our 10th anniversary, we're lighting up the future with a new name, and exciting progress.

Read More About Our New Name


Read Our Press Release


In the News

National Public Radio Features LuMind-Funded Researchers

NPR, August 25, 2014

Health Beat: Down Syndrome: The Key to Alzheimer's disease?

WFMZ, San Diego - July 18, 2014

"Support Cells" in Brain Play Important Role in Down Syndrome

BioScience Technology - July 18, 2014

In Science of Down Syndrome, Another Piece of the Puzzle

Modern Messy - May 20, 2014

Research News Could Lead to New Lines of Investigation

April 2014

Shoddy Sorting Disrupts Memory-Making Signals

AStar Research - April 23, 2014

Can Down Syndrome Research Also Help Alzheimer's Patients?

Cape Cod Times — March 21, 2014

People With Intellectual Disabilities Get a Say in Drug Trials

Wall Street Journal – March 10, 2014

IQ Boosting Drugs Aim to Help Kids with Down Syndrome Learn

Bloomberg News – March 3, 2014

New Drugs May Transform Down Syndrome

Scientific American – March 1, 2014

Upcoming Events

September 10, 2014

Hayes PMC Golf Event

Join Hayes PMC for the inaugural golf outing to support the LuMind Foundation. The golf tournament will be held at The Orchards Golf Club in Belleville, Illinois. Registration is open now! Learn more and sign up for your foursome or sponsorship today

September 27, 2014

The Big Windy - A Night of Comedy to Support Down Syndrome Organizations

Our good friends over at Stand Up For Downs are helping us raise some money through laughter. The Big Windy is coming to the Chicago area (Elmhurst, Illinois) on September 27th beginning at 8:00 pm. It’s going to be one hilarious and incredibly entertaining night of comedy, food, drinks, silent auction, and dueling pianos. For details and ticket information, go to www.standupfordowns.org. Thank you Rob, Ellen and all the great folks at Stand Up for Downs!

September 29, 2014

Hayes Mechanical Golf Outing

Hayes Mechanical wraps up its summer of support for LuMind Foundation by hosting a golf outing at The Players Club in Omaha, Nebraska. For more information and to sponsor or register for the event, please contact Kristin Dohse at 402-779-7323.

October 10, 2014

Ashley Rose Golf Classic

Enjoy a beautiful fall day playing golf in the foothills of Bull Run Mountain in Haymarket, Virginia. This is the fourth annual golf outing to support LuMind Foundation and we are so happy to have everyone involved on our team. Check out the course, named the best public course in the DC area: Bull Run Country Club. Registration details to come.

October 12, 2014

NY Romp for Research

It's been 10 years since the LuMind Foundation opened its doors as the Down Syndrome Research & Treatment Foundation, and we're inviting our friends and colleagues to join us in celebrating this milestone during the 9th Annual New York Romp for Research that will be held on Sunday, October 12, 2014, at Asphalt Green in New York City. Since its founding in 2004 as DSRTF, LuMind has become the leading private source of funding in the US, generating more than $9.6 million to support results-driven research to improve cognition for people with Down syndrome. Be sure to save the date — and please let us know if you're interested in joining the volunteer committee, supporting the event through sponsorship, or joining us for a day of celebration. More details coming soon!

October 18, 2014

3rd Annual Funding for Futures, Chicago

Save the date and join us alongside the Chicago river in October at Lizzie McNeill's as Chicago turns out to support LuMind Foundation. Check out more at:  www.fundingfutureschicago.com.

View past events >>


LuMind Foundation

225 Cedar Hill Street, Suite 200  Marlborough, MA  01752
Phone: 508.630.2177

LuMind Foundation

225 Cedar Hill Street, Suite 200  Marlborough, MA  01752
Phone: 508.630.2177

© 2014 LuMind Foundation. All Rights Reserved.