First Lady Mary Pat Christie Lights the Way for Ds Cognition Research

Thank you New Jersey First Lady Mary Pat Christie for championing the “Light the Way” program! Twenty-nine states and territories to date will be participating in Mrs. Christie’s campaign by showing support for Down syndrome cognition research on March 21, 2015, World Down Syndrome Day.

From Governor Christie’s office:

First Lady Mary Pat Christie Spearheads “Light the Way” Initiative with First Spouses from Across the Nation to Bring Greater Awareness of Down Syndrome Cognition Research

Drumthwacket to Illuminate in Blue on March 21st to Recognize World Down Syndrome Day

For Immediate Release                                                                Contact: Kevin Roberts
Friday, March 20, 2015                                                                 609-777-2600

Drumthwacket  “Lights the Way” in blue for World Down Syndrome Day.

Trenton, NJ – First Lady Mary Pat Christie is leading a national effort to bring attention to Down syndrome cognition research, a bio-medical initiative targeted at developing drug therapies aimed at improving memory, learning and communication for individuals with Down syndrome. Mrs. Christie is being joined by 28 other First Spouses from around the country who are participating in this year’s “Light the Way” program to help raise awareness in their home states.

Additionally, Governor Christie has proclaimed March 21 as Down Syndrome Day in New Jersey. Later that evening, Drumthwacket, the Governor’s official residence in Princeton, will be illuminated in blue to symbolize Mrs. Christie’s support of Down syndrome cognitive research.

“I am pleased to have so many First Spouses participate in this year’s Light the Way campaign and I sincerely thank them all for lending their support to an effort that not only expands awareness, but helps to empower adults and children with intellectual and developmental disabilities in New Jersey and across the nation,” said First Lady Mary Pat Christie. “The vital research generated through foundations like Research Down Syndrome (RDS) and LuMind are spurring scientific advancements that are giving these individuals greater opportunities to live independent and fulfilling lives that emphasize community, work and self-reliance.”

To date, First Spouses from Alabama, Alaska, Arizona, Colorado, Florida, Hawaii, Idaho, Illinois, Kansas, Kentucky, Louisiana, Maine, Maryland, Mississippi, Montana, Nevada, New Jersey, New Mexico, North Carolina, North Dakota, Pennsylvania, Ohio, South Carolina, Tennessee, Utah, Washington, West Virginia, Wisconsin and Wyoming are participating in this year’s Light the Way initiative.  In Florida, Governor Rick Scott and First Lady Ann Scott declared March 16-20 Down Syndrome Awareness Week and on March 21,  the Florida Governor’s Mansion will be lit in blue.

March 21 is particularly meaningful to the Light the Way campaign because Down syndrome results from the presence of three copies of chromosome 21. Down syndrome is the most common chromosomal disorder, affecting over 400,000 Americans. It occurs in approximately 1 in every 700 births.  Between 2006 and 2010, approximately 1.2 of every 1,000 babies was born with Down syndrome.

The Light the Way campaign will add support to the efforts of non-profit foundations Research Down Syndrome (RDS) and LuMind Foundation to educate and increase awareness and funding for Down syndrome cognition research. Research already funded by the foundations is  making encouraging progress in identifying potential treatments to lessen the impact of Alzheimer’s disease in persons with Down syndrome. Alzheimer’s disease is 3-5 times more likely to occur, at an earlier age of onset, in individuals with Down syndrome.

In the last few years, researchers have made significant progress toward understanding and treating the cognitive issues associated with Down syndrome. This initiative has led to several discoveries and supported the initiation of four clinical trials testing potential drug treatments. These studies now provide the promise of biomedical therapies for improving memory, learning and communication in individuals with Down syndrome, offering the potential for increased life opportunities.

For more information, please visit http://www.researchds.org or http://www.lumindfoundation.org.

 

 

 

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.

NIH Releases 2014 Research Plan

We’re very pleased to announce that NIH has just released the updated document “Down Syndrome Directions,” the NIH Research Plan on Down Syndrome. The research plan will provide another great way to work with the DS community to further research efforts.

“In succeeding the previous NIH Plan for Down Syndrome released in late 2007, ‘Down Syndrome Directions’ represents a very important plan for Down syndrome research,” said Dr. Michael Harpold, LuMind’s Chief Scientific Officer and also chair of the DS-Connect® Governance Board. “The plan builds on the very dramatic research progress and incorporates significant new directions to address the health of children and adults with Down syndrome.”

‘Down Syndrome Directions’ was developed with input from the entire Ds community and the many comments and ideas were compiled by the NIH staff.

Added Dr. Harpold, “We especially thank NIH for their sincere consideration and incorporation of the many feedback comments from those in the Down syndrome community, including individuals, organizations and the researchers and clinicians. We look forward to continuing to work together with the NIH, and all of the community, in implementing this plan and furthering significant progress in creating new opportunities for all children and adults with Down syndrome.”

To read or download a PDF of “Down Syndrome Directions,” visit NIH’s publication page.

For more information on the DS-Consortium, please visit their webpage.