Monthly Archives: August 2014

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.

In Memoriam: Dr. Pavel Belichenko

Pavel BelichenkoIt is with great  sadness that we share that Dr. Pavel Belichenko passed away unexpectedly on August 9, 2014. Pavel has been a key member of the research group working together with Bill Mobley and supported by the LuMind Foundation since 2004, both at Stanford and more recently at University of California, San Diego. During that time Pavel was a major contributor to addressing a number of the significant research questions and projects that have advanced the dramatic progress in Down syndrome cognition research that has brought both new fundamental insights and made possible the progress to new clinical trials.

Pavel Belichenko2For all of us who have known and worked with Pavel, and particularly his colleagues on the LuMind Scientific Advisory Board, as well as the entire Down syndrome research community, will miss his focus, engaging and supportive demeanor and especially his as yet unrealized insights and contributions

For more information on Pavel’s many accomplishment, here’s a link to a tribute from his colleagues at the University of California, San Diego.

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!

Shon Christy Joins LuMind Foundation As Newest Board Member

Shon ChristyShon Christy has been with LuMind Foundation as an active committee member and the Foundation is pleased he accepted a leadership role in the organization.  Christy and his wife Brittany are parents to five beautiful children, including an wonderful, playful son named Beckett who has Down syndrome. Welcome Shon!   Read more in our press release.

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.

Why Give?

LuMind Foundation funded researchers and founder talk about the promise of Down syndrome research. Learn how much has been accomplished in the arena of Down syndrome cognition research in the ten years since LuMind Foundation was established and get inspired by the excitement of our researchers.

Keep the breakthroughs coming – please donate today!

The DeNoble Family Foundation Pledges $100,000 to Support Down Syndrome Cognition Research

With sincere gratitude, we announce a generous $100,000 pledge from The DeNoble Family Foundation. We appreciate their support of our mission to fund Down syndrome cognition research through LuMind Foundation.

The DeNoble Family Foundation were motivated to make their generous donation in response to our co-founders Roger and Dawn Kafker offering a challenge gift of $250,000 to inspire others to support our mission .

Thank You Football

It takes all types of support to keep the cognitive development research breakthroughs moving through the investigation pipeline.

Large grants from philanthropic organizations help us take leaps, but every donation helps with those very important small steps.

A very special thank to the DeNoble Family Foundation and all of our numerous supporters!

LuMind Vice Chairman Ryan Hartman Named President and CEO of Insitu

Ryan Hartman, LuMind Foundation’s incoming Board Chairman, has been named as president and CEO of Insitu, a Boeing company. In the announcement of his new position, Boeing acknowledged Hartman’s track record of advancing research and engineering, coupled with strong management skills. We are so happy to have those skills be part of the LuMind Foundation Board of Directors. You can read more about Ryan’s new role with Insitu/Boeing, on the company website.

Congratulations, Ryan – and we’re glad to have you on our team!