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.

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.

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.

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.

DS Consortium: Collaborate to Innovate

MC900439611Since the founding of LuMind Foundation a decade ago, the researchers receiving foundation grants are encouraged to share findings with others in their discipline and other important fields. That condition is based on the belief that collaborating yields better and faster research breakthroughs.

In that same spirit, LuMind Foundation is proud to be part of the DS Consortium, a public-private partnership between the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and a set of stakeholders interested in Down syndrome research.

“We all talk informally, but creation of the DS Consortium helped us come together to exchange information and work collaboratively on identifying and then developing approaches to issues of critical importance to the Down syndrome research effort,” said LuMind Foundation’s Chief Scientific Officer Dr. Michael Harpold. “When we collaborate as a group we can significantly facilitate and advance innovative ideas, research, and relationships. More can be accomplished with increased and focused interaction to benefit children and adults with Down syndrome.”

Through the initiative of Dr. Yvonne Maddox, then Deputy Director of the NICHD, the DS Consortium was kicked off in September 2011. As a long-time member of the Down syndrome research community, Dr. Harpold attended the inaugural meeting along with other research foundations, national advocacy groups, self-advocate representation, and medical and governmental organizations – all with an interest in Down syndrome research.

“The consortium fosters collaboration and discussion to improve outcomes for people and families with Down syndrome,” explained Dr. Melissa Parisi, Chief of the Intellectual and Developmental Disabilities Branch of the NICHD, the National Institutes of Health (NIH) division primarily tasked with Down syndrome research. “There was much discussion about the need for a patient registry in the group. NIH, together with the consortium, created a registry resource to connect the Down syndrome community with the researchers.”

That registry, DS-Connect™, now confidentially and securely holds basic medical and demographic information for more than 2000 people with Down syndrome. That data can then be utilized, with permission of the participants, to offer opportunities to join in clinical studies and trials. The de-identified information is being made available to the Down syndrome community, researchers and clinicians to provide insight to many medical concerns specific to people with Down syndrome.

Another Consortium goal was to design an updated NIH research agenda for Down syndrome. NIH, together with input from the Consortium members, developed the updated the NIH DS Research Plan for Down Syndrome and issued a draft report for public review in 2014.

“A major product of the Consortium so far has been involvement with the updated DS Research Plan,” said Dr. Parisi. “In the past we had a generic theme of ‘Living with Down Syndrome,’ but thanks to the insight from Dr. Harpold and others we added a module on “Down Syndrome and Aging” in direct response to those comments and received valuable feedback from the families.” The Down Syndrome and Aging section addresses the need for additional research areas as an individual with Down syndrome ages, particularly with respect to early onset Alzheimer’s disease.

“The consortium reflects a growing partnership,” added Dr. Sujata Bardhan, a Scientific Program Manager with the NICHD. “We are seeing huge benefits to other consortium members and the NIH through the Consortium.  We are all reaping its benefits.”

Dr. Harpold says collaboration in the research world is critical because when researchers and clinicians work together to understand and answer complex questions, a small discovery in one location can lead to a bigger one elsewhere. The spirit of collaboration is key in the laboratory and also in the meetings of the Consortium. Some of the organizations in the DS Consortium provide overlapping services, but they don’t view themselves as competitors. Dr. Harpold says the collaboration enhances everyone’s effectiveness.

“We all participate in the DS Consortium because we believe in collaboration, not in unproductive competition. We have a common goal: to improve the health outcomes for people with Down syndrome,” said Dr. Harpold.

Learn more about the DS Consortium including seeing a list of all the member organizations, by visiting the NIH website.

National Public Radio Features LuMind-Funded Researchers

ADThank 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!

What would a 15% increase in cognition mean?

Welcome Throwback Thursday!

This video may be from 2011, but our mission remains the same: fund research that increases cognition by 15% for people with Down syndrome.

Enjoy – then take15 minutes to spread the word or donate $15 to get back 15% for your loved one with Down syndrome.