LuMind Foundation and Research Down Syndrome Have Merged

LuMind Foundation and Research Down Syndrome have combined resources and programs. Together, we have contributed nearly $12 million to stimulate cognition research, resulting in the discovery of multiple drug targets and supporting the initiation of four clinical trials.

The LuMind Foundation (formerly the Down Syndrome Research and Treatment Foundation – DSRTF) and Research Down Syndrome (RDS), worldwide leaders in advancing Down syndrome cognition research, together announce consolidation of the two organizations. The new foundation will pursue their shared mission more effectively and efficiently, and leverage the tremendous progress each has made to ignite Down syndrome cognition discoveries.

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The merged organization will be named LuMind Research Down Syndrome Foundation. The LuMind Research Down Syndrome Foundation will be led by a national board of directors, consisting of board members from both organizations. Ryan Hartman will continue from his position as LuMind Foundation Chairman of the Board and Dan Flatley, Research Down Syndrome founder and Chairman, will serve as Vice Chairman.

Carolyn Cronin, recently named President and CEO, will lead the organization. Robert C. Schoen, Ph.D., formerly President, Research Down Syndrome, will be Director, Donor and Event Engagement. Dr. Michael Harpold will remain as the Chief Scientific Officer, leading the very successful research program. LuMind Research Down Syndrome Foundation will be consolidated and headquartered in Marlborough, Massachusetts.

“The LuMind Foundation and Research Down Syndrome have shared a mission of funding cognition research for people with Down syndrome and a Scientific Advisory Board for many years,” explained Hartman. “Our mission includes raising $25 million in five years to support Down syndrome research. Now we are coming together to speak with one voice on issues that are relevant to individuals and families in the Down syndrome community, and leverage resources to increase funds for research grants.”

It is the mission of LuMind Research Down Syndrome Foundation to stimulate biomedical research to accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome enabling them to participate more successfully in school, lead more active and independent lives, and avoid the early onset of Alzheimer’s Disease.

“Bringing the organizations together will increase our fundraising capacity and accelerate bio-medical programs that, in just a few years, have already demonstrated great success,” Flatley added.

Research funded by LuMind Foundation and Research Down Syndrome has led to the discovery of multiple pathways contributing to cognitive impairment that may serve as potential drug targets and four clinical trials testing possible drug therapies are currently underway.

Scientific Advisory Board

researchThe core of the LuMind Foundation’s successful research program is our Scientific Advisory Board (SAB), comprised of the brightest minds in research across disciplines and from around the world. Lead by our Chief Scientific Officer, Dr. Michael Harpold, the SAB met in person in mid-February to guide the organization’s mission to fund the most promising lines of discovery.

“Thank you to all the members of the LuMind SAB for volunteering their time from their very full schedules to attend the SAB meeting,” said Dr. Harpold. “We value their thoughtful expert perspectives and contributions in reviewing the progress of the current LuMind-supported research and strategic research directions to further advance and accelerate progress.”

The SAB continues to be enthusiastically unified that the LuMind Foundation Research strategy, program, and grants continue to be remarkably successful and transformative for Down syndrome cognition research and its potential for creating significant and meaningful new opportunities for children and adults with Down syndrome.

The SAB meeting and discussions provide a foundation for the next steps in further assessing research projects and developing recommendations for the next new 2015-2016 LuMind Foundation Research Grants.

Truly heartfelt thanks and appreciation for each of the SAB members for their continued dedication to working with the LuMind Foundation to continue to advance critical, influential and game-changing new Down syndrome cognition research.

Members of the SAB are:

  • Michael M. Harpold, PhD, Chair – Scientific Advisory Board and Chief Scientific Officer
    LuMind Foundation
  • Ronald M. Evans, PhD, Professor and March of Dimes Chair in Molecular and Developmental Biology, Gene Expression Laboratory, Salk Institute for Biological Studies
  • Leslie Leinwand, PhD, Professor, Molecular, Cellular and Developmental Biology, University of Colorado
  • Lynn Nadel, PhD, Regents’ Professor of Psychology, University of Arizona
  • Roger Harper Reeves, PhD, Professor, Department of Physiology, Johns Hopkins University
  • André Strydom, MBChB, PhD, Senior Clinical Lecturer, Intellectual Disabilities and Mental Health Sciences Unit, University College London

You can read more about the SAB on our website, including more about our SAB members.

Dr. Harpold at the NIH Alzheimer’s Disease Research Summit 2015

We appreciate Dr. Michael Harpold for being such a road warrior on behalf of the Down syndrome community.

On February 9-10, 2015, Dr. Harpold, LuMind Foundation’s Chief Scientific Officer, attended the biennial NIH Alzheimer’s Disease Research Summit 2015, a major forum for the dynamic development of coordinated Alzheimer’s disease research efforts under the Congressionally-mandated National Alzheimer’s Plan.

As stated on the NIH website, the central goal of the AD Research Summit 2015 is to continue the development of an integrated multidisciplinary research agenda necessary to address critical knowledge gaps and accelerate the discovery and delivery of efficacious treatments for AD patients at all stages of disease.

Attending this conference provides an additional major forum to increase support and advocacy for greater inclusion of research on Alzheimer’s disease in individuals with Down syndrome and its contributions to a deeper understanding of Alzheimer’s disease and the development of effective new therapeutics, not only for individuals with Down syndrome, but everyone.

For more information about the summit including access to webcasts of the two-day event, please visit the NIH website.

Glitter and Glue: NYT Bestselling Author Kelly Corrigan at Down Syndrome Research Fundraising Event

By Nicole Gibbard, Event Organizer, Glitter and Glue, Chicago, February 28, 2015

Kelly Corrigan TravelLast year on Linkedin, one of my favorite authors, Kelly Corrigan, posted a personal challenge to raise $1M for charity as part of her 2015 Glitter and Glue paperback book tour.  I knew immediately she was speaking to me and I couldn’t wait to bring this beloved author to our community while also raising funds for children with Down syndrome.  I couldn’t imagine anything better.

Selecting LuMind Foundation to benefit from Corrigan’s appearance was an easy choice.  My five year-old niece, Mia Wuellner, has Down syndrome.  From the day she was born her loving parents, Sarah and Tom, have worked to give her the best life.  Early on they looked for organizations that would eventually help their daughter lead a more independent life full of every possibility.  This search lead them to the LuMind Foundation.  LuMind works with Stanford University, John Hopkins, Emory University, and others to fund research.  Historically, an underfunded area, there are breakthroughs on the horizon for children like Mia and LuMind is driving the issue. This research is helping to develop drugs to improve cognitive function in individuals with Down syndrome.  Medication that can address the cognitive and behavioral deficits in both adolescents and adults with Down syndrome is currently being explored.  This is music to the ears of Sarah and Tom.

Corrigan is the author of The Middle Place, Lift, and Glitter and Glue.  All three books weave the joy of family and the fragility of life in such a way to make us all laugh and cry – sometimes on the same page.  Her books remind us to pause and embrace the craziness that is life.  Glitter and Glue is a tribute to Corrigan’s complicated relationship with her own mother and best attempts at raising her daughters.  As Kelly’s prose in Glitter and Glue reminds us “time goes only one way, things end, affections wax and wane – I was the sole distributor of the strongest currency they would ever know: maternal love.”

Our family is in this life journey, rooting for Mia to live her life to the fullest. With LuMind’s research breakthroughs, Sarah and Tom’s love will take Mia’s potential even further.

kelly Corrigan Glitter and GlueKelly Corrigan will be appearing at the Glitter and Glue event on February 28, 2015 in St. Charles, Illinois. To purchase tickets, which include a copy of the book Glitter and Glue, visit the ticketing website.

And… THANK YOU NICOLE!

 

Reaffirming our Mission: Down Syndrome Cognition Research

“Neither rain nor snow nor gloom of night …” may belong to the Post Office, but our Board Members braved the cold, snow and ice to focus on our mission and growth measures so we can have an even greater impact on Down syndrome cognition research.

On a very snowy Saturday, January 24, 2015, The LuMind Foundation board members flew in from California, New York, Illinois, and Ohio, and drove from closer locations to attend an in-person Board Meeting in Massachusetts. We want to thank all the Board members – You bring inspiration, vision and energy to the cause of Down syndrome cognition research.

There was plenty of energy at the meeting, as some members met their peers for the first time and others reunited with friends. Our theme was team and members were encouraged to wear their college or professional sports team colors. Although there were some rivalries, we are all on the same team when it comes to our mission: funding cognition research for people with Down syndrome.

In the upcoming months we will be sharing more on the outcome of our Board meeting where we discussed our strategic plan, fundraising events, and the state of the organization. We have big plans, a great team, and thanks to the research you’ve funded, an attainable bright future for all individuals with Down syndrome.

Check out some of the pictures below. See anyone you know?

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Is Ds Research Advancing Alzheimer’s Disease Research – Or is it the Other Way Around?

How are Down syndrome and Alzheimer’s Disease connected?

It is an interesting and surprising finding that every person with Down syndrome develops by age 40 the brain pathological changes of people with Alzheimer’s disease. Moreover, most people with Down syndrome in old age – i.e., beyond age 60 – show further cognitive decline. This is a devastating aspect of Down syndrome and one that is quite disconcerting for those that care for elderly individuals with Down syndrome.

The question is how to explain the link between Down syndrome and Alzheimer’s disease. There is no certain view at this time, however, some recent findings are very exciting. They point to a specific gene that is present in three copies in Down syndrome, which is known to be linked to Alzheimer’s disease. In ongoing studies, researchers are testing how this gene might contribute to the development of Alzheimer’s disease in people with Down syndrome.

How can research in Alzheimer’s disease help us understand and treat Down syndrome?

Because people with Alzheimer’s disease and elderly people with Down syndrome have the same pattern of brain pathology, it is reasonable to suppose that advances in understanding Alzheimer’s disease and new therapies to treat Alzheimer’s disease can be applied to people with Down syndrome. Indeed, this is already happening.

A number of studies are underway to test a role for cholinesterase inhibitors in people with Down syndrome. Cholinergic neurons are important for learning and memory and they are sick in both Alzheimer’s disease and Down syndrome. They release a neurotransmitter called acetylcholine. The breakdown of acetylcholine is under the control of molecules called cholinesterases. Drugs that decrease the activity of these enzymes increase the level of acetylcholine. This helps increase memory in people with Alzheimer’s disease, if only for a short time. Recent studies suggest that these drugs may also be used to treat Down syndrome. One can readily imagine that other therapies directed at Alzheimer’s disease might be made available to people with Down syndrome.

Conversely, studies on mouse models of Down syndrome may well provide new insights into how best to treat people with Alzheimer’s disease. Indeed, the research strategy for Down syndrome differs in some important ways from the typical strategy used to understand Alzheimer’s disease. Work on Down syndrome might provide an important new way of thinking about what causes degeneration of neurons in Alzheimer’s disease and how to treat or prevent it.

Dr. Harpold Quoted in Education Week Articles on Down Syndrome Research

Education Week HeaderEducation WeekLuMind Foundation’s Chief Scientific Officer, Dr. Michael Harpold, was quoted in an article by Education Week on the NIH Down Syndrome Research report.

In the article, titled “NIH Resets Study Plans for Down Syndrome,” author Sarah Sparks summarizes the seven-year research plan, including discussing a greater focus on students in educational settings.

Dr. Harpold is quoted on the report illustrating an emphasis on improving cognition and the interrelationships between educational approaches and research areas. He also acknowledges that funding for research endeavors is a critical factor in progressing research.

Read more comments by Dr. Harpold on NIH’s research plan and read the entire Education Week article here.

Dr. Harpold was also quoted in another article, also on Education Week, discussing DS-Connect, the Down syndrome registry. Read that article here.