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.

Sincerely,

Carolyn

 

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.

Identifying More of the Ds Puzzle Pieces

Researchers at UC Davis are helping to unravel the complexities of Down syndrome by identifying a group of so-called supporting cells in the brain that may be related to abnormal neuron development. The research team obtained evidence of a potentially critical role of astrolgia cells in people with Down syndrome. The researchers created a human cellular model based on skin cells from people with Down syndrome and performed detailed physiological studies and screened for possible drugs that may alleviate some of the abnormalities. Read more about this discovery.

The tremendous breakthroughs continue to come at an unprecedented pace in the world of Down syndrome cognitive development research!

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.

NDSC Convention: Setting the Pace

We enjoyed meeting friends and making new ones at the National Down Syndrome Congress convention in Indianapolis from July 11-13, 2014. We especially want to thank the people who got up early on Saturday morning to show an interest in research by attending our presentation "Advances in Down Syndrome Cognition Research – Dramatic Progress in Translating Discoveries into New Therapies." Carolyn Cronin, Dr. Michael Harpold and Dr. Roger Reeves addressed a crowd of more than 200 people and answered questions about the opportunities created by your donations to LuMind.

 

In the Winner's Circle: A Look at the Race for Research

We raised more than $100,000 for Down syndrome cognition research!

For pictures, stories and memories, check out our Facebook Page, where we posted updates throughout the three-day Road Rally.

Thank you to NASCAR for covering LuMind's race for Research Road Rally as we crossed the finish line at the NASCAR Hall of Fame in Charlotte, NC. Check out the video and hear from our teams and honorary co-chair, David Ragan on why they raced for research.

Clinical Trials UPDATE: Roche Initiates RG1662 Phase II Clinical Trials for Individuals with Down syndrome

LuMind Foundation-supported research has led to clinical trials currently in progress to address developmental cognitive deficits and those impairments associated with Alzheimer’s disease.  Learn more about the Phase II Roche clinical trial and other clinical trials.

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!

Want to Learn More about the Race for Research?

Take the word of our honorary co-chair! NASCAR Driver David Ragan, who is co-chairing the event with his wife Jacquelyn, was on the John Boy and Billy Radio Show talking about the inaugural Race for Research to benefit LuMind Foundation. Listen in!

Ds Research Questions: Asked by a Parent, Answered by Experts

Like many parents, Victoria Vila, a freelance writer and member of the Down Syndrome Association of Greater Charlotte, had questions about research and studies on Ds. To answer those questions, she turned to LuMind's Chief Scientific Officer Dr. Michael Harpold and Campbell Brasington, a certified genetic counselor at the Down Syndrome clinic at Levine Children’s Hospital. Then Victoria captured the answers in her blog, so she could share what she learned. 

Ryan Hartman Voted in as Vice Chairman of LuMind Foundation

LuMind Foundation is pleased to have Ryan Hartman accept the responsibility as Vice Chairman of LuMind Foundation. We are so pleased to have Ryan's continued input and guidance with the organization. 

"Like many families of children with Down syndrome, soon after our son Taylor was born, my wife and I found ourselves searching for answers on how to provide Taylor the opportunity to achieve his best. Our search for answers lead us to LuMind Foundation," explained Ryan. "We immediately recognized the difference LuMind Foundation endeavors to make for people living with Down syndrome. I'm so very humbled and proud to be a part of a team focused on providing Taylor and others living with Down syndrome the opportunity to live a more active and independent life." 

Please join us in welcoming Ryan to his new position with the foundation.

Did you miss our webinar "Down Syndrome Cognition Research: Memory and Sleep?"

In this special Mother's Day presentation, Dr. Jamie Edgin provided an update on the current state of work on memory formation and sleep-dependent learning in children and young adults with Down syndrome. She also highlighted other recent discoveries and new directions in her lab, including progress on the development of new cognitive assessments for young children with Down syndrome (the Arizona Memory Assessment for Preschoolers and Special Populations, or A-MAP).  Learn more and watch a replay. 

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.

Our New Video

Hear what our researchers have to say in celebration of World Down Syndrome Day!

The Connection between Ds and Alzheimer’s Disease

All adults with Down syndrome over 35-40 years of age develop the characteristic Alzheimer’s neuropathology, including the formation of beta-amyloid plaques, with earlier onset of dementia developing in more than 70% of individuals. More… 

LuMind Foundation 2013-2014 Grant Awards Exceed $1M

LuMind Foundation has provided over $9.6 million to advance Down syndrome cognition research.  Recipients of this year's funding include researchers at Johns Hopkins Medicine; the University of California, San Diego; the University of Arizona; Stanford University; and the VA Palo Alto Health Care System. More…

DS Connect: Down Syndrome Registry Aims to Connect Families and Individuals with Ds to Researchers

DS Connect is a secure centralized information clearinghouse funded and launched by NIH. It is a resource for communication among families, researchers, clinicians, and patient groups, and will be an essential tool in supporting new clinical studies and trials to benefit people with Ds. To learn more about the registry, download DS-Connect’s informational flyer or visit DS-Connect now.

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

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

August 21, 2014

Hayes Mechanical Golf Tournament

Hayes Mechanical is holding a golf outing on Thursday, August 21 at  Apple Mountain in Freeland, Michigan. Get in a few more rounds and support a great cause! Learn more and sign up for your foursome or sponsorship today.

August 21, 2014

Dramatic Progress in Down Syndrome Cognition Research: Mind to Lab Bench to Bedside

Dr. Michael Harpold will be joining DADS of Southeast Michigan presenting the latest advances on cognition development research. The presentation is on Thursday, August 21, beginning at 6:00 pm with a complimentary buffet, followed by the presentation at 6:45 pm. The meeting will be at the Club Venetian Banquet Center in Madison Heights. Reservations required: DADSofSEM@gmail.com

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 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 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@LuMindFoundation.org

LuMind Foundation

225 Cedar Hill Street, Suite 200  Marlborough, MA  01752
Phone: 508.630.2177
LuMind@LuMindFoundation.org

© 2014 LuMind Foundation. All Rights Reserved.