Monthly Archives: March 2013

“Light the Way Event” Is Observed by Governor First Spouses on World Down Syndrome Day

New Jersey Governor First Lady Mary Pat Christie and other Governor First Spouses have joined together to bring attention to Down syndrome cognitive research, research that holds great promise for improving memory, learning and communication for individuals of all ages with Down syndrome. This evening, Drumthwacket, the official residence of the Governor of New Jersey, will be illuminated in the color blue to symbolize First Lady Christie’s support of Down syndrome cognitive research. First Spouses across the country are planning to showcase the color blue on their individual state Governor’s residence or other buildings, either through illumination, a blue ribbon or a variety of other decorations. In other recognition, First Spouses have issued communications or arranged proclamations supporting Light the Way.

Mrs. Christie is being joined today by First Spouses from Alabama, Alaska, American Samoa, Arkansas, Delaware, Kansas, Maine, Maryland, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, North Carolina, Oklahoma, Tennessee, Utah, Virginia, Washington, West Virginia, Wisconsin, and Wyoming in endorsing this event. The goal of the Light the Way program is to expand awareness of Down syndrome cognitive research, including the efforts of Research Down Syndrome to fund this research. Mrs. Christie stated “I am inspired by initiatives which are designed to empower individuals in New Jersey and was so pleased that other First Spouses participated in this campaign the last two years.”

Thank you First Spouses!

A Mom’s Video Supporting Down Syndrome Research

In this video made in observance of World Down Syndrome Day, a mother of a young son with Down syndrome describes why she supports cognitive research to develop drug therapies to address intellectual disabilities in Down syndrome.

In recent decades, improved health care, expanded education and community opportunities and the support of families and advocacy groups has improved quality of life for individuals with Down syndrome, and life expectancy has increased from 20 to 60+.

While progress over the last ten years certainly has been encouraging, there remains a large unmet medical need for drug therapies to address the learning challenges associated with Down syndrome, as well as the increased likelihood for Alzheimer’s disease.

Yet, remarkable progress in Down syndrome cognitive research has been made over a relatively short period of time. A clinical trial is underway to test a potential drug that improves neuro-transmission in a mouse model, and two other trials are underway.

Support like Lara’s is helping sustain momentum for this remarkable research initiative. To learn more, contact RDS at or

Roche Research Sheds Light on Improving Neurological Deficits in Mouse Model of Down Syndrome

PharmaLive reports on a just published article in the Journal of Neurosciencia. Roche scientists, along with researchers from the University of Cantabria and the Cajal Institute, detail studies that used a compound to selectively block specific receptors in the brain of a mouse model with Down syndrome and reverse key neurological defects.

Roche compound(RD1662) is currently being tested in a human clinical trial. This compound “acts on subset of the receptors for the chemical messenger GABA that are present in discrete brain regions associated with cognitive processing where they inhibit communication between nerve cells”, as the article describes. The compound reverses the GABA-A mediated over inhibition that interferes with proper nerve cell signaling.

Research Down Syndrome continues to make grants in this area of research.

 Read the full article here.

The article quotes Luca Santarelli, Head of Neuroscience at Roche, “Our drug research in Down syndrome may offer a novel therapeutic avenue to treat the cognitive deficits in people with Down syndrome, enhance their communications skills and ultimately help them have greater independence in their daily lives. The development of this agent is in line with our strategy to discover new medicines that are based on a deep understanding of disease mechanisms and provide options for conditions of high unmet medical need.” 

Dr. Santarelli was a recipient of Research Down Syndrome’s “Empower the Extraordinary” award in 2012.

RDS Runners Charity Racing Program Presented at February DSAIA Conference

Research Down Syndrome was pleased to participate in the Down Syndrome Affiliates in Action Conference held Feb. 21-24 in Cincinnati. Attendees learned about the Foundation’s Race for the Extraordinary program, the national charity initiative to support Down syndrome cognitive research. This program has the potential to significantly re-state public support for Down syndrome research.

RDS Newsletter February 2013

Did you know that research to understand and treat intellectual disabilities in Down syndrome is funded by private foundations at a level reaching no more than $2-3 million per year? Contrast this to research support in other areas. In 2010, for example, leading foundations that back Parkinson’s, Cystic Fibrosis and Autism research made scientific grants in the $20-50 million dollar range. Continue here.

World Down Syndrome Day 2013

For family members, friends, and compassionate helpers, Down syndrome is part of your daily reality. That’s true for us at DSRTF, too. We know the joy of loving people with DS — and we know the urgency of helping them build a future in which their promise can be fulfilled.

This month we take that message worldwide. March 21 — 3/21 — is World Down Syndrome Day. On this global awareness day, people around the world reaffirm their commitment to advocacy and inclusion, celebrating the vital role people with Down syndrome play in our societies.

The theme of this year’s WDSD Conference at the United Nations is “Right to Work,” focusing on the right of people with DS to earn a living in an inclusive, accessible labor market, and the importance of community support in making it a reality. We are proud that our work — delivering increased independence and opportunity through cognitive improvements — supports this imperative.

We hope you’ll help us celebrate through our efforts this month:

  • 3/21 Matching. On Thursday, March 21, donations will be matched 3:1. Last year your WDSD contributions raised nearly half a million dollars for cognition research — by giving and sharing this opportunity with friends and family, you can make this year even bigger.
  • Webinar: DS Cognition Research 101. This special presentation will offer an introductory look at Down syndrome cognition research: the science, the goals, the results thus far — and what you can do to help. Speakers from DSRTF and Roche will offer an informative, accessible look at current topics in DS research and the clinical trials currently underway. If you’re new to research or know someone who is, register now, then join us at 10 AM PT / 1 PM ET on Thursday, March 21 for this free online seminar. Register now.
  • World Down Syndrome Day Map. Last year we invited friends to help us put DS on the map — to send in photos and statements about what an improvement in cognition could mean to their loved ones. Will you help us build on this effort? Send a photo along with a brief statement answering this question: “What could a 15% increase in learning, memory, and speech mean for your loved one with DS?” (Please include your name, your town, and the name of the person pictured.) Together we’ll show what a world of possibility could open up through continued research and progress.

We’re excited to celebrate the power and the potential of increased independence for people with DS worldwide — on 3/21 and every day.