Monthly Archives: September 2014


For today’s Throwback Thursday, we look back just a few months ago to World Down Syndrome Day at the United Nations on March 21, 2014.


Enjoy all the talks or fast forward ahead to about 2:34.12 for the Down syndrome cognition research portion of the day’s talks moderated by LuMind Executive Director Carolyn Cronin with presentations from:

  • Dr Yvonne Maddox, NICHD – Down Syndrome Research and Advocacy: Improving Lives Together
  • Dr William Mobley, University of California San Diego – Enhancing cognition in people with Down Syndrome
  • Professor Antony John Holland,  University of Cambridge – Understanding the link between Down syndrome and Alzheimer’s disease: developing preventative treatments
  • Debora Seabra, Self-Advocate – Healthcare must be inclusive – Article 25 of UN Convention on the Rights of Persons with Disabilities


Dr. Harpold Announced as Chair, DS-Connect® Governance Board

A longtime participant in the DS Consortium and DS-Connect® Registry Governance Board, LuMind Foundation’s Dr. Harpold will lead the Board overseeing DS-Connect® as the registry moves into its second year.

Dr. Michael Harpold, chief scientific officer at LuMind Foundation, has accepted an invitation from the National Institutes of Health (NIH) to serve as Chair of the Registry Governance Board for DS-Connect®.

DS-Connect Homepage FullDr. Harpold has been serving as an active representative on the Down Syndrome Consortium, the private-public partnership that worked with the NIH to create DS-Connect®, the Down syndrome registry launched by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) last year. DS-Connect® is a health data registry for people living with a diagnosis of Down syndrome (DS). Dr. Harpold has also been serving as an inaugural member of the DS-Connect® Governance Board.

“Dr. Harpold’s commitment to research in Down syndrome and his contributions to the registry have had a major impact on its success. We are very pleased to have him serve as chair of the DS-Connect Governance Board,” said Dr. Melissa Parisi of NICHD, who serves as director of the registry and Chair of the Down Syndrome Consortium.

Dr. Harpold succeeds Dr. Yvonne Maddox, who served as Deputy Director of the NICHD until her recent appointment to serve as Acting Director of the National Institute on Minority Health and Health Disparities by the NIH Director.

“I am very honored to be asked to serve as the new chair of the DS-Connect® Governance Board and to continue working together with my distinguished fellow Governance Board colleagues, those on the DS-Connect® Operations Board and NICHD as DS-Connect® expands offerings, including launching a Professional Portal for approved researchers, clinicians and health practitioners to access aggregate de-identified data as well as design, develop and undertake important new research and clinical studies,” said Dr.Harpold. “I especially thank Dr. Yvonne Maddox for all of her tireless efforts in making DS-Connect® a reality, and her dedicated leadership as the inaugural chair of the DS-Connect® Governance Board. DS-Connect® represents a long-needed and incredibly important resource for researchers, clinicians and all of the Down syndrome community.”

“Dr. Harpold is a recognized leader in the Down syndrome research community,” said LuMind Foundation Executive Director Carolyn Cronin. “His experience, expertise and willingness to collaborate and connect with researchers, individuals with Down syndrome and families with a loved one with Down syndrome are all valuable assets to our organization and the greater Down syndrome community.”

DS-Connect® is designed to connect its registered participants with information about the larger Ds community, including providing people with Ds and their family members with important knowledge about medical and demographic information, new research findings and treatments and opportunities for participating in new research studies and clinical trials. All the data is kept secure and confidential and registrants have direct control over their information and if or how often they are notified of research opportunities. DS-Connect® currently has more than 2200 people registered.

Research Down Syndrome Announces 2014/2015 Grant Awards to Fund Down Syndrome Cognitive Research

Research Down Syndrome (RDS) has announced funding for five grants to support Down syndrome cognitive research.

RDS is committed to supporting the identification of the causes of the intellectual impairments associated with Down syndrome and to facilitating the development of pharmacological therapies to improve memory, learning and communication in persons with Down syndrome, and to address the increased likelihood of Alzheimer’s disease. Encouraging progress has been made over a very short time. Three human clinical trials are underway, less than a decade after the support of private foundations stimulated the progress of Down syndrome cognitive research.

Research Down Syndrome, among the leading sources of private funding for Down syndrome related cognitive research, prioritizes funding towards programs with a high probability of readily contributing to the development of safe and effective therapies.  Continued private donations are needed to support the constantly expanding research efforts that will lead to potential medical treatments.

The 2014/2015 RDS Research Grants include:

Johns Hopkins University School of Medicine: RDS Research Center Grant entitled “A Down Syndrome Center for Fundamental Research”

Emory University School of Medicine: RDS Research Center Grant entitled “The Down Syndrome Cognition Project”

University of California, San Diego School of Medicine: RDS Research Center Grant entitled “Defining the Genes and Mechanisms and Treatments for Neurodevelopmental and Neurodegenerative Causes of Cognitive Dysfunction in Down Syndrome”

University of Arizona: RDS Innovation Research Grant entitled “The Neuropsychology of Down Syndrome”

Stanford University School of Medicine: RDS Innovation Research Grant entitled “Mechanisms Underlying the Roles of Sleep and Circadian Rhythms in the Learning Disability of Down Syndrome”

VA Palo Alto Health Care System: RDS Innovation Research Pilot Grant entitled “Improving Adrenergic Signaling for the Treatment of Cognitive Dysfunction in Down Syndrome”

Detailed information on these grants can be found here.

LuMind Foundation Awards $1.1 Million in Grants to Advance Down Syndrome Cognition Research

LuMind Foundation, the nation’s leading Down syndrome cognition research organization, has contributed $10.5 million to fund cognition research since the organization was founded in 2004.

September 10, 2014 (Marlborough, Mass.) – The LuMind Foundation (formerly the Down Syndrome and Treatment Foundation – DSRTF) announces the award of $1.1 million in funding for six new LuMind Research Grants, propelling Down syndrome cognition research. The latest recipients of LuMind Foundation grant funding are researchers at Johns Hopkins School of Medicine, Emory University School of Medicine, University of California San Diego School of Medicine, University of Arizona, Stanford University and VA Palo Alto Health Care System.Grants 2015 Quote

The LuMind Research Grants for 2014-2015 significantly build upon the LuMind-supported research that has led to dramatic breakthroughs in defining specific mechanisms responsible for cognitive impairment in Down syndrome, as well as the identification and pursuit of nine new potential drug targets for improving cognitive function, learning, memory and speech, involving the developmental intellectual disability, and overcoming the additional cognitive decline and neurodegeneration associated with the earlier onset Alzheimer’s disease and aging in individuals with Down syndrome.

“The new grants supporting these exceptional investigators and their research will significantly accelerate further progress in discovery, translational, and clinical research for new therapies to improve cognitive function for children and adults with Down syndrome,” said Dr. Michael Harpold, LuMind Foundation’s Chief Scientific Officer and Chair, Scientific Advisory Board. “LuMind recognizes that without the generous financial support of the Foundation’s donors, these new advances, grants, and initiatives would not be possible, and we continue to be extremely grateful to all for their support.”

LuMind Foundation, a national nonprofit organization founded in 2004, focuses exclusively on identifying and funding critical biomedical cognition research for children and adults with Down syndrome. The Foundation’s mission is to accelerate the development of treatments that will allow people with Down syndrome to:

  • participate more successfully in school and work
  • lead more active and independent lives, and
  • prevent additional earlier cognitive decline associated with Alzheimer’s disease.

“With the  earlier development of Alzheimer’s disease in the majority of 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,” added Dr. Harpold. “LuMind Foundation’s Research Program and Grants, including proactive and strategic engagement with biopharmaceutical companies, have been critical in addressing key strategic priorities and accelerating the unprecedented advances and progress leading to the initiation of landmark clinical trials.”

The new 2014-2015 LuMind Research Grants include:

Johns Hopkins University School of Medicine – receiving $175,000 LuMind Research Center Grant for “A Down Syndrome Center for Fundamental Research-Cognition.”

Emory University School of Medicine – receiving $210,000 LuMind Research Center Grant for “The Down Syndrome Cognition Project (DSCP)” with co-Principal investigators from nine additional institutions (Johns Hopkins University, Kennedy Krieger Institute, University of Arizona, University of California Davis/MIND Institute, University of Pittsburgh, Oregon Health and Science University, Children’s National Medical Center Washington DC, UPenn/ Children’s Hospital of Philadelphia, Waisman Center/University of Wisconsin).

University of California, San Diego School of Medicine – receiving $235,000 LuMind Research Center Grant for “Defining the genes, mechanisms and treatments for neurodevelopmental and neurodegenerative causes of cognitive dysfunction in Down syndrome.”

University of Arizona – receiving a $195,000 LuMind Research Innovation Grant for “The Neuropsychology of Down Syndrome.”

Stanford University – receiving a $165,000 LuMind Research Innovation Grant for “Mechanisms Underlying the Roles of Sleep and Circadian Rhythms in the Learning Disability of Down Syndrome.”

VA Palo Alto Health Care System – receiving a $120,000 Innovation Research Pilot Research Grant for “Improving Adrenergic Signaling for the Treatment of Cognitive Dysfunction in Down Syndrome.”

For individual Research Grant Project Summaries with more detailed information, please visit our web site.

Tribute 21 – The 2nd Annual Masquerade Ball Benefiting RDS and the Tribute 21 Fund

LuMind Foundation Receives $500,000 Gift

thank you colinWe are happy to announce the receipt of a $500,000 gift to LuMind Foundation in support of our mission to improve the lives of people with Down syndrome by funding the most promising lines of research.

When our founders began LuMind Foundation a decade ago (then the Down Syndrome Research and Treatment Foundation), they believed in the promise of greater opportunities for independence for their loved ones with Down syndrome through advances in cognitive development. Now so many people also see their vision and support LuMind and cognition research.

Thank you to donor for the very generous gift and thank you to all of our donors, supporters and volunteers who can see the bright future ahead.

DS-Connect: The National Down Syndrome Registry

It has been nearly a year now since the NIH launched the first National Down Syndrome Registry. Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members, on their behalf, may sign up to create personalized profiles with information about their health histories, including symptoms, diagnoses, and medical visits. The website has been designed to ensure that all information remains confidential. The site will separate users’ names from their health information, so that individuals may compare their health information with that of all other participants in an anonymous manner. Here is the link to DS-Connect:

If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan.

This PDF link provides more detail on the registry: