RDS spreads the word on promise of cognitive research at Buddy Walks

The weekend of October 23rd and 24th featured two very successful Buddy Walks.  Research Down Syndrome was invited to attend and delighted to help spread the word on the successes and promise of cognitive research.  The Alexander’s Angels 4th Annual Buddy Walk was held on a beautiful day at Hecksher State Park on Long Island with approximately 2000 individuals, family members, friends and advocates attending.  The very large parking lot was almost full!  A variety of children’s events, costumed characters and great music, including the Chris Burke Band entertained the enthusiastic crowd.  Following the Buddy Walk and lunch, the participants continued to enjoy themselves through the afternoon.  Well done, Esther Gomes-Nieto(President of Alexander’s Angels), the Down Syndrome Advocacy Foundation, the Association for Children with Down Syndrome, the volunteers, the National Down Syndrome Society and the entire Alexander’s Angels team.
RDS also enjoyed participating in the

Kathy Ireland speaks out on shortfall of Down syndrome research

Kathy Ireland has a three month old niece, Polly, who was born with Down syndrome.  Recently, she met with leaders in Washington, D.C., to speak out against the shortfall in NIH funding of Down syndrome research.  In this article, she notes that funding is now reduced to a level of less than 0.01% of the NIH budget.  In her comments, Ireland acknowledged the strong support of a bipartisan congressional caucus which is advocating an end to this shortfall in research, but, she noted there is one important voice missing, “Yours”.  RDS agrees, and encourages everyone to support increased public and private funding of

Congratulations on your wedding, Monica and David

Monica and David met, fell in love, and were married.  Now, like any other couple, they are adjusting to married life and are busy establishing careers. Congratulations, Monica and David, on your new life together.   

Research Down Syndrome is dedicated in its support of Down syndrome cognitive research, and the potentials for enhancing life opportunities for all persons with Down syndrome, leading to increased educational and employment opportunities—and perhaps, independent living. RDS believes in a future where couples such as Monica and David can establish truly independent lives

Texas “Chain Saw Manicure”

The Down Home Ranch outside of Austin is a working farm and ranch, where about 40 adults and children - including 20 with Down syndrome and other disabilities - live year round, caring for 340 rolling, forested acres of the Post Oak Savannah in Central Texas.  At the ranch, people with and without disabilities live and work together - tending the animals, raising food, and celebrating life together. 

An underbrush fire on a neighboring ranch prompted the founder of the Ranch, Jerry Horton, to gather supporters and stage a “Chain Saw Manicure”, to clear the space of brush and increase safety on the property.  The volunteer “manicurists” and ranch residents enjoyed a day of work, and, we’re sure, a lot of fun as

New Jersey First Lady Hosts Event Supporting Research Down Syndrome

On Saturday evening, September 25, New Jersey First Lady, Mary Pat Christie, hosted a reception and dinner at Drumthwacket, the Governor’s mansion, in support of Research Down Syndrome(RDS) and the Foundation’s mission of increasing life opportunities for individuals with Down syndrome.
Encouraging support of Down syndrome cognitive research, Mrs. Christie recognized the work of RDS in its support of research directed towards the development of treatments to address the cognitive difficulties associated with Down Syndrome.
“Today, the occurence of Down syndrome remains a serious health concern, appearing in about 1 in 700 births,” said Mrs. Christie.  “As parents, we always want the best for our children, and the important work of RDS is helping families address the unique challenges of having a family member with Down syndrome.”
Mrs. Christie was presented with an award by RDS for her commitment to the cause of Down syndrome cognitive research.
At the event, Roger Reeves, Ph.D.,

Kennedy Krieger awarded $8.5 million to study aging and dementia in adults with Down syndrome

The NIH recently announced it has awarded the Kennedy Krieger Institute an $8.5 million grant to address crucial gaps in knowledge about Alzheimer’s disease in adults with Down syndrome.  This will allow the Baltimore based institute to undertake a variety of projects to extend the understanding of the onset and progression of Alzheimer’s disease within the older population with Down syndrome to its earliest stage of clinical impact. Hopefully, the findings can have direct implications for promoting more successful aging for adults with DS.  Learn more about this research project here.

Research Down Syndrome looks forward to the findings which result from this work.  Increased private funding of Down syndrome cognitive research through your support of Research Down Syndrome encourages increased NIH funding for such

University of Arizona news item summarizes Down syndrome cognitive test battery

Our news section included a story August 18th about the development of a battery of tests that is an important advance as Down syndrome cognitive research approaches clinical trials in humans.  Here is an article in the University of Arizona news that provides a very readable account of this advance.  The article notes that the battery could “have value as a before-and-after tool for assessing interventions. Knowing what therapy might work best and whether that has made a difference requires a precise set of measures. It also becomes a key piece of information for assessing the outcome of various clinical

A collaborative approach to Alzheimer’s disease research

Alzheimer’s disease(AD) is far more common in persons with Down syndrome than the general population.   Most, if not all, persons with Down syndrome begin to exhibit the brain pathology associated with AD by the age of forty.  The onset of AD occurs earlier in persons with Down syndrome, and its prevalence reaches up to 75% in individuals above the age of 60.  While the reasons behind the increased risk of Alzheimer’s disease in Down syndrome are not completely known, studies have suggested one association may be that the extra copy of chromosome 21 leads to increased production of beta amyloid protein, which is known to contribute to neuronal degeneration in AD.  Down syndrome cognitive research and Alzheimer’s disease investigations are, therefore likely to yield information which will advance knowledge about both conditions. 

Here is a New York Times article that describes an initiative in Alzheimer’s disease research that has led to unprecedented cooperation between

Down syndrome neurocognitive test battery developed

Drs. Jamie Edgin and Lynn Nadel, along with their collaborators, have published a study describing a series of tests, the Arizona Cognitive Test Battery(ACTB) which they developed as a tool to assess cognitive function in individuals with Down syndrome.  The ACTB will provide neurocognitive assessment in individuals with intellectual disabilities, an important advance as Down syndrome cognitive research approaches clinical trials in humans.  The test battery is non-verbal and was designed to assess a range of skills, display statistical sensitivity, have specific correlates with brain function, and apply to a wide range of ages.
The availability of the ACTB is an important step as Down syndrome cognitive research transitions from animal trials to clinical trials in persons with Down syndrome. Additional details may be found

Scientists identify additional cancer blocking genes on chromosome 21

“It’s incredibly inspiring to know that by studying the genetic make-up of people with Down’s Syndrome we have been able to make important discoveries that help us understand far more about the intricate processes involved in cancer tumour growth.”
So states Professor Kairbaan Hodivala-Dilke, from Queen Mary, University of London, commenting on her recently published research which has identified two additional genes on chromosome 21 that in triplicate boosted protection against cancer development in studies with mice.
This study, which was published in Nature, adds to the growing understanding of why development of hard tumors in persons with Down syndrome is so