Monthly Archives: March 2014

3rd Annual Night of Art & Blues: RDS Fundraiser in South Bend, IN – May 10

The 3rd annual Research Down Syndrome cocktail reception and silent auction, A Night of Art & Blues is being held on Saturday, May 10, 2014 at Heritage Hall in the Joyce Arena on the campus of the University of Notre Dame. There will be lots of food, an open bar, and live blues music. If you have any questions, send an email to info@artandblues.com. The night promises to be a great time supporting a great cause!

A Night of Art & Blues is a fundraiser to raise money for Down syndrome cognitive research. All money raised will be used to support research at a wide range of top research institutions

 

First Lady Mary Pat Christie Announces Drumthwacket To Light the Way On March 21 To Recognize National Light The Way Initiative

Thank you First Lady Mary Pat Christie for your continuing advocacy in support of Down syndrome cognitive research!

Trenton, NJ – Raising awareness of advancements being made in Down syndrome cognitive research, First Lady Mary Pat Christie has announced that the Governor’s Official Residence, Drumthwacket, will be illuminated in blue Friday evening, March 21, to support the national Light the Way initiative. 

“I am pleased to once again participate in the national Light the Way effort,” said Mrs. Christie. “Vital research being done by organizations like Research Down Syndrome (RDS) are responsible for quality of life improvements for thousands of individuals with Down syndrome and their families here in New Jersey and across the country. Equally important, these advancements are empowering people with intellectual disabilities to live more independent and fulfilling lives.” 

Light the Way is annually observed on World Down Syndrome Day, March 21, 2014. The date is meaningful 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 in the United States. It occurs in approximately 1 in every 700 births. 

Down syndrome cognitive research is a rapidly advancing area of research that holds great promise for improving memory, learning and communication for individuals of all ages with Down syndrome.  The goal of the Light the Way program is to expand awareness of Down syndrome cognitive research, including the efforts of the non-profit foundation RDS to fund this research.

 

Our New Video

Hear what one of our founders and our researchers have to say in celebration of World Down Syndrome Day!

 

World Down Syndrome Day Virtual Run/Walk

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A Snowball Fight in D.C. Raises Funds for RDS

Danny Douglas saw the weather forecast. The D.C. area was going to get hit with a snowstorm, and Danny thought a snowball fight would be a great way to raise money for a charity. Stephanie Holland, a friend who says that "Research Down Syndrome will always be true to my heart", suggested RDS as the cause. Quickly, Danny organized the Battle @ Ballston, posted the event on social media, and encouraged D.C. area residents to come armed and ready to fight it out in support of RDS. Hundreds joined the event on Monday, March 3. Afterwards, many of the snowball fighters headed to event sponsor Wilson Tavern. The next day, RDS received a kind donation from the proceeds. Thank you Danny, Stephanie and Wilson Tavern.

snowball

The RDS “Hall of Honor” for Down Syndrome Associations

It is encouraging  that more local associations are adding research support to their program services. Sizable contributions to RDS and Down syndrome cognitive research have been made by Alexander’s Angels of Long Island, Heart of Illinois Down Syndrome Association, Northern New Jersey Down Syndrome Alliance, Down Syndrome Association of Greater Charlotte, Down Syndrome Association of Central Texas, East Texas Down Syndrome Group and Greater Clear Lake Families Exploring Down Syndrome. Thank You!

Most recently, RDS President Bob Schoen received a donation from the Charlotte group, representing funds raised at their Nov. 9, 2013 321 Dash for Down Syndrome 5K Fun Run. The event was so successful, and fun, that DSAGC has planned another run for April 26

charlotte check picture with dsagc

When all associations across the country begin following this lead, national support for Ds research will be fundamentally re-stated, leading to significant increases in funding and even more rapid progress of this remarkable medical initiative.

RDS can assist your organization in making a commitment to support research. Please reach out to RDS at info@researchds.org . It would be a privilege to meet with your association members and share the exciting progress of Down syndrome cognitive research.
Thank you so much for your continued assistance to the Down syndrome community!

National Institutes of Health Research Plan on Down Syndrome – 2014 Draft

The NIH Research Plan for Down Syndrome is being updated. In 2012, a Request for Information (RFI) was published for comments on the plan, which originally was written in 2007. Linked here is the 2014 draft plan, which incorporated many of the comments gathered when the RFI was sent.
The elements of focus are:

  •  Pathophysiology of Down Syndrome and Disease Progression
  •  Screening, Diagnosis and Functional Measures of Ds related Conditions
  •  Treatment and Management
  •  Down syndrome and Aging
  •  Research Infrastructure

Your attention is especially directed to pages 7-9, which outline Short/Long term Objectives for Treatment and Management. Cognition research and treatment is highly emphasized. If you have any comments, you may reply directly to the NIH here:downsyndrome@mail.nih.gov<mailto:downsyndrome@mail.nih.gov 
Of course, key to this objective is continuing to identify research funding resources. 
Thank you for your continued support of RDS in its role of funding research aimed at understanding and treating learning disabilities in Down syndrome.