Monthly Archives: January 2015

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.




FAQ: Isn’t Down syndrome too complex to treat?

Young girl smilingFor many years, scientists believed that Down syndrome was too complex to understand, and they believed that there was no way to reverse or reduce the severity of cognitive impairment. However, via two distinct approaches, over the last decade scientists have made unprecedented progress towards identifying a treatment to ameliorate the cognitive impairment associated with Down syndrome.

The first approach is based on genetics.  Scientific advances have made it possible to understand how specific genes are linked to specific abnormalities in the structure and function of the brain. Although the 21st chromosome has hundreds of genes, researchers believe that there may be only a handful that significantly impact cognition. Using advanced techniques and methods, researchers believe they will be able to isolate the effects of these specific genes and determine how their expression in the brain can cause problems with cognition.

The second approach is to study the endpoints of brain structure and function in mouse models. By investigating the physical differences and the resulting functional impacts, researchers are able to define specific mechanisms responsible for cognitive dysfunction.  Once these are established, they can begin the process of discovering treatments that enhance brain function, including cognition.

Today Down syndrome is not too complex to understand and it is not too difficult or too late to treat.

– From the Frequently Asked Questions portion of our website. Read more answers to other frequently asked research questions. 

If you have general questions about Down syndrome cognition research, send an email to or fill out the form below.


DSG Renews Commitment to Ds Cognition Research

DSGKCWe are so happy to announce a $10,000 gift from the Down Syndrome Guild of Greater Kansas City.

“DSG is a longtime supporter of the LuMind Foundation as we know funding Down syndrome cognition research could provide our members a better quality of life and the opportunity to achieve their full potential,” explained Amy Allison, Executive Director of DSG and a LuMind Foundation Board Member. “We are grateful for LuMind’s commitment to driving critical cognition research as we know it will lead to a brighter future.”

DSG is an engaged member of the Ds community, participating in awareness and educational events that stretch well beyond the Kansas City area, including the amazing film “Just Like You.”  We are proud to have such wonderful friends!

Thank you Amy and all the visionary members of DSG!