We are Now LuMind Foundation!

DSRTF is celebrating ten years of breakthroughs with a new identity: The LuMind Foundation. We're excited to have you with us as we continue our mission of bringing light to the science of cognition research, and as we move forward into a brighter future of opportunity and independence for people with Down syndrome.

Please update your bookmarks and visit our new site: LuMindFoundation.org

Improving cognition

The Down Syndrome Research and Treatment Foundation is dedicated to finding a treatment to improve cognition including learning, memory and speech for individuals with Down syndrome.  Since our founding in 2004 we have become the leading private source of funding in the United States for Down syndrome cognition research.  Read about our results.

 

Roche initiates new multi-national screening protocol clinical study for anticipated RG1662 Phase II clinical trial in individuals with Down syndrome

Roche, a leader in innovative research-focused healthcare and the world’s largest biotech company, has initiated a new multi-national pre-assessment clinical study to further evaluate eligibility for enrollment of adults and adolescents in an anticipated Phase II clinical trial for RG1662. With completion of the previous groundbreaking Phase I clinical trial with this new drug, this new trial includes a single day screening visit to identify potential participants with Down syndrome for a Phase II clinical trial with RG1662 to determine efficacy in improving learning, memory and language abilities.

This new trial, “A Screening Protocol to Assess Adults and Adolescents with Down Syndrome for Eligibility for Upcoming Study of RG1662 (Study BP27832),” will evaluate potential participants ages 18-30 at nine US clinical trial sites located in La Jolla, CA; Decatur, GA; Chicago, IL; Baltimore, MD; Boston, MA; Durham, NC; Dallas, TX; Salt Lake City, UT; and Madison, WI. The trial will evaluate potential participants ages 12-30 at 17 international clinical trials sites located in Argentina (3), Canada/Nova Scotia (1), Mexico (4), New Zealand (3), Singapore (1), Spain (3), and the United Kingdom (2).

Get information on US recruitment and participation hereLearn more about international recruitment and participation here. Find out more about all Roche clinical studies and trials in individuals with Down syndrome.

Announcing Our 2013-2014 Research Grant Awards

Over $9.6 million awarded to date

The entire DSRTF team is pleased and proud to announce our 2013-2014 Research Grant Awards.  With the funding of these new grants, DSRTF has now provided over $9.6 million to advance Down syndrome cognition research.  Recipients of this year's funding include researchers at Johns Hopkins University School of Medicine for their work with a network of institutions participating in the Down Syndrome Cognition Project; the University of California, San Diego; the University of Arizona; Stanford University; the VA Palo Alto Health Care System; and an international multidisciplinary research conference to take place in March 2014.

We're honored to support these exceptional investigators and their innovative research as they continue to take the field forward.  DSRTF's Research Program and Grants have been instrumental thus far in addressing key strategic priorities on the research agenda and accelerating the advances that have led to the initiation of landmark new clinical trials.  With this year's awards, we extend our substantial support of discovery, translational, and clinical research for new therapies to improve cognition for people with Down syndrome.

Dr. Michael Harpold, DSRTF's Chief Scientific Officer and Chair, Scientific Advisory Board, points out that DSRTF's support reaches beyond these direct awards. "The results made possible by DSRTF Research Grants have provided leverage for supported researchers to gain more than $10 million in additional research funding to date through the NIH and other sources." Without the generous financial support of our donors and supporters, these new advances, grants, and initiatives would not be possible. All of us at DSRTF join in expressing our gratitude for your commitment to delivering increased learning, memory, and speech for people with Ds.  View the full list of awards.

Balance Therapeutics’ COMPOSE clinical study for BTD-001 - Ongoing Patient Enrollment

Balance Therapeutics is currently conducting a Phase Ib clinical trial at multiple sites in Australia to assess the safety and potential efficacy of a compound that could enhance cognitive function in people with Down syndrome age 13 to 35.  The Compose study (Cognition and Memory in People with Down Syndrome) is evaluating the potential of a compound called BTD-001 to improve memory, language, and learning. BTD-001 is well understood and had been used over decades to treat a variety of conditions. The clinical study is based on original research at Stanford University which was supported by the Down Syndrome Research and Treatment Foundation. The National Institutes of Health has also provided funding grants to support additional development.

Learn more about this clinical study opportunity, including participation.

Research Advance: Cognitive Deficits of DS May Be Linked to Stem Cell Defects

DSRTF-Supported Research Offers New Insight into Rapid Aging in People with DS

The learning and physical disabilities conferred by Down syndrome may be due at least in part to defects in the body's stem cell regulation — including some defects which can be alleviated by reducing the expression of just one gene on the 21st chromosome.

Led by Michael Clarke, M.D., and Maddalena Adorno, Ph.D., researchers at the Stanford University School of Medicine have released new findings in the September 11 issue of Nature Medicine showing that nerve, and other, stem cells affected by Ds do not grow or renew themselves as well as unaffected cells, and that this dysfunction can be corrected by lowering the expression of one particular gene — designated Usp16 — to more normal levels.

The findings, funded in part by DSRTF, offer new insight into the question of why people with Ds appear to age more rapidly, developing by age 40 the brain pathology associated with Alzheimer’s disease. Having three copies of chromosome 21, and therefore the Usp16 gene, "accelerates the rate at which stem cells are used during early development, which likely exhausts stem cell pools and impairs tissue regeneration in adults with Down syndrome,” said Stanford’s Craig Garner, Ph.D., co-director of Stanford’s Center for Research and Treatment of Down Syndrome, co-author of the study, and a DSRTF grant recipient. “As a result, their brains age faster and are susceptible to early-onset neurodegenerative disorders.”

The researchers found that reducing Usp16 overexpression provides what Clarke called “unambiguous rescue” at the stem cell level, restoring the growth of adult stem cells in different tissues, including those in the brain. “This could represent a potential new therapeutic target,” according to Dr. Michael Harpold, DSRTF’s Chief Scientific Officer, “to ameliorate some of the effects of early-onset aging.” Learn more.

Research Advance: Experimental Drug Normalizes Cerebellar Growth, Improves Cognition in DS Mouse Model

DSRTF-Supported Researchers Open New Avenue for Investigating Potential Therapies

A major study describing a significant new potential therapeutic interventionto improve learning and memory in Down syndrome has been published in the September 4 issue of Science Translational Medicine.

DSRTF-supported researchers at Johns Hopkins University School of Medicine, led by Dr. Roger Reeves, professor of genetic medicine, showed that in a mouse model of Down syndrome, a single dose of an experimental drug on the day of birth not only normalized the growth of the cerebellum, but also normalized learning and memory in a specific cognitive test.

 

Dr. Roger Reeves of Johns Hopkins University School of Medicine

The drug, SAG 1.1, activates an important biochemical signaling pathway called the sonic hedgehog pathway (Shh), an important new therapeutic drug target. Additional research will be required to determine precisely how the drug works through this pathway to improve learning and memory; to discover an optimal drug based on this approach; and to understand the wider ramifications of any therapy, since the Shh pathway is involved in so many crucial physiological processes. The potential for therapeutic applications in humans is as yet unknown, given the complexity of the pathway and the potential for unintended consequences. Nor is this approach to improving cognition all-inclusive: “Down syndrome is very complex,” cautions Dr. Reeves, “and nobody thinks there's going to be a silver bullet that normalizes cognition. Multiple approaches will be needed."

Still, the positive results of this work are hugely encouraging: This exciting research represents a completely new avenue for investigating potential therapies, according to Dr. Michael Harpold, DSRTF’s Chief Scientific Officer. “We’re extremely pleased to have provided critical grant funding to make this research possible,” he says, “and DSRTF is continuing grant support to Dr. Reeves and Johns Hopkins to advance this potential therapeutic strategy." We are proud to have underwritten Dr. Reeves’ groundbreaking work since 2007. With DSRTF’s ongoing support of this research, we continue our commitment to advancing discovery and translational research to improve learning, memory, and speech for people with Down syndrome.

Elan Announces New Clinical Trial in Down Syndrome

First Patient Dosing Takes Place in Safety Study

Biotechnology company Elan Corporation, plc, has announced the initiation of a Phase 2A clinical trial of ELND005 (scyllo-inositol) in young adults, 18-45 years of age, with Down syndrome. ELND005 is a molecule that may hold the potential to improve cognition in Ds by reducing aggregation of beta-amyloid, which is a product of the amyloid precursor protein (APP) encoded by a gene on chromosome 21 — thus preventing the intraneuronal buildup of beta-amyloid plaques that most people with Ds develop by their 40s — and addressing a metabolic abnormality in Ds that correlates with the severity of cognitive dysfunction. The study now underway will primarily evaluate the safety and pharmokinetics of the molecule, and will include select cognitive and behavioural measures.

There are currently three clinical trial sites in the US: University of California, San Diego in La Jolla, CA; University of California, Irvine in Orange, CA; and Massachusetts General Hospital in Boston, MA. Learn more about this clinical study, including details on participation.

Sign up Now for DS-Connect: The Down Syndrome Registry

Connecting Families and Individuals with Ds to Researchers

As previously reported, DS-Connect: The Down Syndrome Registry debuted in early September 2013, and the number of registered participants is growing. This secure centralized information clearinghouse has been initially funded and launched by NIH, with the collaboration and support of the Down Syndrome Consortium. DS-Connect presents an important 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. Whether your loved one is a child or an adult with Ds, please consider registering — this is a resource that will serve and benefit us all, and an important way all families can contribute to and support needed research. Visit DS-Connect now!

 

Take a Closer Look at plus15

The Campaign

One of Them is Me!

TOP Reasons to Give


  • Our Approach: Our comprehensive and unique Research & Development Pipeline....

  • Our Results: The leading private source of funding in the U.S. with results including 5 drug targets, 3 candidate drugs....

  • Current Research: Promising studies at top universities including Stanford, Johns Hopkins, University of California San Diego....

 

Upcoming Events

 

March 22, 2014

Signs of Support

Bay Area, show your Signs of Support for World Down Syndrome Day. Join Rachel Coleman and friends for a Signing Time! concert in South San Francisco on March 22, 2014.

Signing Time! is an Emmy-nominated television series with an impressive international following. This concert, like the Signing Time! Foundation, is "dedicated to making sign language fun and accessible to all children."


100% of this event's proceeds will go to DSRTF. Buy your tickets now! If you're unable to join us in person, show your Signs of Support by helping raise funds online. Click to be part of the celebration!

March 22, 2014

321 eConference

DSRTF's Dr. Michael Harpold presents Down Syndrome Cognition Research: Dramatic Progress in Translating Discoveries into New Therapies during this innovative new online symposium connecting members of the Ds community in celebration of World Down Syndrome Day. Sign up now to participate in this virtual session, slated for 11:00 AM ET.

March 22, 2014

Celebrating WDSD: Believe in the Possibilities

Why is Down syndrome cognition research important? Alexander’s Angels and DSAF are holding a symposium to explore this question on Saturday, March 22. As part of the program, Celebrating WDSD: Believe in the Possibilities, DSRTF’s Michael Harpold, Rockefeller University’s Dr. Xiao-Fei Kong, and Dr. Patricia White of Research Down Syndrome (RDS) will discuss the far-reaching impact of Ds cognition research. This presentation, offered in celebration of World Down Syndrome Day, will begin at 4:30 PM at Adelphi University in Garden City, Long Island, NY. There is no charge for the symposium, but registration is required — click to RSVP.

The discussion will be followed by a reception and a benefit dance performance of NuBella Productions’ Let the Angels In. Click to purchase tickets for the reception and dance performance.


We look forward to seeing you there for a thought-provoking afternoon and an evening of movement and beauty!

April 26, 2014

Jackapalooza

Friends will be making beautiful music together at this Chicago-area benefit to support DSRTF.  For the second year, young musicians from the Music Institute of Chicago will wow listeners at this charity concert at 5:00 PM at Wilmette Junior High School in Wilmette, IL. $15/adult and $10/child, payable at the door with cash or check only. We hope you'll join us for this evening of culture and camaraderie — and we thank the gifted students who have volunteered to perform!

May 2014

Tea-21

Stayed tuned this May for a very special event in honor of Mother’s Day…the Tea-21 Fundraiser! This unique event will empower mothers across the country to raise money for cognition research in honor of their child with Trisomy 21.  There will be multiple options to fundraise, with online, virtual tea events, traditional, in-home tea parties, a Facebook campaign, and more.  In addition, we ask asking mothers to contribute tea recipes for a Tea-21 Cookbook to promote the event — click here for the submission form. We hope every mother will participate in some way in the Mother’s Day Tea-21 Fundraiser because we know that every mother hopes for a brighter future for her child.  

June 16-18, 2014

Race for Research

The race is on! We're gearing up for our inaugural Race for Research, a three-day road rally to raise funds for Down syndrome cognition research. Set for June 16-18, 2014, the event will be helmed by our Honorary Co-Chairs, David Ragan, third-generation NASCAR driver, and his wife, Jacquelyn, as teams of friends and supporters take to the North Carolina highways, navigating their way from the green flag in Winston-Salem to the finish line at Charlotte’s NASCAR Hall of Fame.


Are you ready to help speed research towards increased opportunity and independence for people with Ds? Sign up to join us in June — and buckle up for an unforgettable ride.

June 17, 2014

Hayes Mechanical Golf Tournament

Chicago contracting company Hayes Mechanical presents its seventh annual Golf Outing to benefit DSRTF. With more than half a million dollars raised for Down syndrome cognition research so far, we look forward to another great day with friends and supporters at Chicago's Harborside Golf Club. Save the date of June 17, 2014 and watch this space for more information about this flagship fundraising event.

October 12, 2014

NY Romp for Research

It's been 10 years since DSRTF opened its doors, 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, DSRTF 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!   

Past Events

 

March 1, 2014

Hoops for Hope

Teens in central New Jersey took it to the hoop to improve the lives of those with Down syndrome. This three-on-three basketball tournament at Watchung’s Valley View School gym included kids grades five through nine, with proceeds to benefit DSRTF. Our sincere gratitude goes to Ryan Lister, a senior at The Pingry School in Basking Ridge, NJ, who founded and organized this event — thanks, Ryan, for taking DSRTF to the top of the key!

November 18, 2013

Race for Research Kickoff and DS Cognition Research Update: Charlotte, NC

At this fast-paced event we kicked off planning for 2014's inaugural Race for Research, a three-day road rally through North Carolina to raise funds for Ds cognition research! Our kickoff was followed by an engaging, accessible look at recent advances in Down syndrome cognition research, including ongoing clinical trials and potential future directions. Thank you to all who attended this free program hosted by the Down Syndrome Association of Greater Charlotte.

 

November 2, 2013

DS Cognition Research Update: Bay Area, CA

What's happening in the world of Ds cognition research? Our audience found out from some of the foremost researchers in the field as Drs. Craig Garner, Craig Heller, and Ahmad Salehi, all of Stanford University, spoke during this informative, accessible presentation. Thank you to our speakers, and to all who attended.

November 2, 2013

One Extra Reason to Live, Love, and Hope

This year marked the eighth annual SoCal benefit for DSRTF! This Harbor City gala event offered food, refreshments, casino games, and a silent auction — we were joined by UCSD's Dr. William Mobley, and enoyed a rare viewing of a private car collection as we shared this unforgettable evening to benefit research. We thank everyone who attended, and the event's generous organizers, for supporting DSRTF's mission!

 

October 26, 2013

Funding Futures

Chicago's Goose Island Brewery was the setting for this unforgettable night of fun and friendship, featuring live music, a silent auction, delicious appetizers, and, of course, cold craft beer, all in support of DSRTF. Thank you to all who attended, and to everyone who helps fund futures, made even brighter by the promise of Ds cognition research.

 

October 13, 2013

Romp for Research
This family fun day at New York City's Asphalt Green is one of DSRTF's most popular events. Thank you all for joining us to celebrate the Romp's eighth year — and for helping support the groundbreaking cognition research we fund.

  

 

View more past events »

 

Down Syndrome Research and
Treatment Foundation

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

Down Syndrome Research and
Treatment Foundation

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

© 2012 Down Syndrome Research and Treatment Foundation. All Rights Reserved.