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Tuesday 23 April 2013

Research news update #3 for 2013

Click on the title of each item to read the full text:

(US) National Institute for Health’s Down Syndrome Consortium website now online
Down Syndrome Reasearch  and Treatment Foundation Newsflash, April 2013
Since its inception we’ve kept you posted on the NIH’s Down Syndrome Consortium, in which DSRTF participates through our Chief Scientific Officer, Dr. Michael Harpold. Now we’re thrilled to pass along the news that its website has launched. This useful resource is designed to serve as a central portal for addressing research needs, communicating research findings, and accessing resources related to Down syndrome, including the National Down Syndrome Patient Registry expected to launch in July 2013. In the months to come as the site expands, parents and caregivers will find it to be an unparalleled source of reliable, accurate, up-to-date information about DS, carefully curated to support our community.

University of New South Wales awarded NHMRC Partnerships for Better Health grant for work in intellectual disability mental health,
Department of Developmental Disability Neuropsychiatry (UNSW), 10th April 2013
The NHMRC have awarded the UNSW Department of Developmental Disability Neuropsychiatry (3DN) Partnership Project with funding to the value of $1,133,558 over four years for their project, ‘Improving the Mental Health Outcomes of People with Intellectual Disability’

Abbeduto receives grant to  study language acquisition in Fragile X syndrome and Down syndrome
UC Davis Mind Institute, 26th March, 2013
A team of researchers led by UC Davis MIND Institute Director Leonard Abbeduto will investigate the effectiveness of testing procedures to examine the spoken language development of people with fragile X syndrome and people with Down syndrome, through a new five-year, $3 million grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health.


Kelsey Kaustinen, Drug Discovery News, 26th March 2013
Scientists from Roche, the University of Cantabria and Spain’s Cajal Institute have published their findings on recent work with Down syndrome that highlights a potential new approach to combat the cognitive damage caused by the genetic condition.

Global Down Syndrome Foundation, 20th March 2013
The Linda Crnic Institute for Down Syndrome (has) awarded $1.3 million to 14 inaugural recipients of the Crnic Grand Challenge Grants. The grant recipients were chosen based on the strength of the science and the likelihood the science would lead to improving outcomes for people with Down syndrome

Hope for People with Down Syndrome: RPCI Researcher Awarded Grant to Identify Causative Genes and Therapeutic Strategies for Down Syndrome-Associated Intellectual Disabilities
Dr Y Eugene Yu
Roswell Park Cancer Institute, 14th March 2013
Y. Eugene Yu, PhD, Associate Professor in the Department of Cancer Genetics at Roswell Park Cancer Institute (RPCI), has received a three-year $250,000 grant from The Children’s Guild Foundation to continue his work to identify all the major causative genes for Down syndrome-associated developmental and intellectual disabilities. In 2010, a grant from the foundation established The Children’s Guild Foundation Down Syndrome Research Program at RPCI, enabling Dr. Yu to continue his groundbreaking work.

Biomedical research and Down syndrome
Professor Sue Buckley OB, Roche Global Down Syndrome Advisory Board, 12th March 2013
To what extent should we help people with Down syndrome lead more rewarding and fulfilling lives? My answer to this question is we should help as much as is practically possible, and pharmaceutical interventions are as important as educational ones.

Epilepsy Management in the Disability Sector - Individual & family survey

The Epilepsy Foundation of Victoria has formed a partnership with Flinders University and Bendigo Community Health Services (BCHS) to explore levels of epilepsy knowledge and the level of involvement of people with epilepsy and their family in developing their Epilepsy Management Plan.

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