Multi-location Down syndrome awareness gala set for Feb. 25

from Northwest Herald:

GiGi’s Playhouse Down syndrome awareness centers in 10 cities, four states and two countries will come together Feb. 25 to celebrate Down syndrome awareness with galas.

Centers in McHenry, Atlanta, Chicago, Des Moines, New York, the Quad Cities, Sioux City, Rockford and Queretaro, Mexico, will be linked via satellite to spread an international message of acceptance and inspiration for individuals with Down syndrome.

This national movement for awareness of Down syndrome began in 2003 when the first GiGi’s Playhouse was started in Hoffman Estates, Scott Perlman, president of GiGi’s Playhouse in McHenry, said in a news release. Since then, 11 have opened across the Midwest, and locations in New York, Atlanta and Mexico are scheduled to open this spring.

Each location focuses on spreading awareness about Down syndrome through national campaigns, and offers free educational and therapeutic programming and tutoring.

The second annual “I Have a Voice” national gala will be an event that reaches beyond the local playhouse communities as it seeks to share the love and inspiration of individuals with Down syndrome, the news release said.

The local I Have a Voice gala will be from 7 p.m. to midnight Feb. 25 at Belvedere Banquets and Events, 1170 W. Devon, Elk Grove Village. Cost is $125 a person.

To register online, visit www.gigisplayhouse.org. For your donation to benefit the McHenry
location, click on the McHenry tab.

For additional information, visit GiGi’s Playhouse McHenry, 5404 W. Elm St., Suite A, McHenry, or call 815-385-7529.

brain imaging study to explain connection between Down syndrome and Alzheimer's

from Varsity Online:

The University has unveiled an ambitious £1 million brain imaging study this week, which is investigating why people with Down syndrome are at such a high risk of developing Alzheimer’s in later life. With the exception of a few rare familial links to the devastating disease, Down syndrome is the only disorder known to correlate so clearly with dementia.

Professor Tony Holland, of the Cambridge Intellectual and Developmental Disabilities Research Group, the organization charged with leading the research, has stated that almost 100% of people with Down syndrome with go on to develop dementia. Even more worryingly for these sufferers and their families is Professor Holland’s assertion that symptoms of dementia often manifest themselves up to 40 years earlier in those who have Down syndrome.

Recent medical advances may mean that those with Down syndrome are living longer and better lives, but this increase in life expectancy is leaving more and more sufferers at the risk of developing dementia, a consequence that Professor Holland described as a ‘poisoned chalice’ for patients. He is now urging those with Down syndrome to come forward as volunteers for this groundbreaking project.

The four-year study, funded through the Medical Research Council in partnership with the Down Syndrome Association intends to examine the role of beta amyloid in the development of Alzheimer’s. Scientists are already aware that people with Down syndrome have more amyloid in their brains and hope that their findings will shed light on the causes of this specific form of dementia for the population as a whole.

Across the UK, 700,000 people are diagnosed with dementia annually at a cost of £17 billion. Dementia is commonly associated with memory loss but is also responsible for changes in mood as well as communication and reasoning problems. The degenerative nature of the disease means that sufferers will inevitably end up needing round the clock care.

With the UK population set to rise to 70 million by 2027, it seems this funding boost has come at just the right time.

February webinar: Executive Functioning in Students with Down Syndrome

From the NDSS:

Please join NDSS for our February webinar, "Executive Functioning in Students with Down Syndrome." The presentation will be February 23 at 1:00pm ET and will include guest speakers Dr. Deborah Fidler, Associate Professor in the Department of Human Development and Family Studies at Colorado State University, and PI Dr. Lisa Daunhauer, Assistant Professor in the Department of Human Development and Family Studies at Colorado State University.

Dr. Deborah Fidler’s research expertise is in the area of early development in children with neurogenetic disorders, with a particular focus on the emerging behavioral phenotype in Down syndrome. Dr. Fidler currently serves as Associate Editor of the American Journal on Intellectual and Developmental Disabilities and Down Syndrome Quarterly.  She has published over 30 articles on cognition and behavioral development in children with Down syndrome and other developmental disabilities.

PI Dr. Lisa Daunhauer has strong research and clinical assessment experience working with young children with developmental disabilities, including Down syndrome. Dr. Daunhauer serves as the lead investigator on two U.S.

Department of Education grants related to learning in Down syndrome, and has written numerous research and review pieces on development in Down syndrome and its implication for performance in academic and daily living contexts.

Before turning to academia, Dr. Daunhauer’s clinical experience included serving as a school district coordinator for occupational therapy services.

There will be time to ask questions of the speakers during the webinar and slides from the presentation will be posted the NDSS website.

Feel free to share this webinar and the login information with anyone you feel may be interested in the presentation.

Click here to register for the webinar. 

Contact Vanessa Quick, Manager of Education and Programs, at vquick@ndss.org or 212-763-4364 with any questions about the webinar. 

family's journey of acceptance and love

Kelle Hampton discusses her family's journey of acceptance and love on ABC News

Research Down Syndrome enters second year of national running program

from News Medical:

Research Down Syndrome (RDS), a nonprofit foundation that is among the leading sources for funding of Down syndrome related cognitive research, is entering the second year of its national running program, Race for the Extraordinary, to help increase public awareness and funding for Down syndrome research.  The mission of RDS is the development of safe and effective therapies to address the intellectual difficulties associated with Down syndrome.
 
Building on successful marathon and other race events during 2011 in major cities, including New York City, Chicago and San Diego, RDS is expanding its running program to greatly increase its research funding, and has been accepted as a charity partner in multiple marathons across the country. Shorter fun races are being organized as well.  "We are grateful for the enthusiastic support we received in events during 2011," states Dr. Robert Schoen, RDS President, "Our goal is to support persons with Down syndrome by significantly increasing our fundraising in 2012."

Advances in Down syndrome research have led to such progress as the recent initiation by Roche Pharmaceuticals of a Phase 1 clinical trial to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome. The RDS Race for the Extraordinary initiative will add increased support for such research.

In recent decades, improved health care, expanded education and community opportunities, and the support of families and advocacy groups has improved the quality of life for individuals with Down syndrome.  As a result, Dr. Schoen notes, "Over the past 30 years, the life expectancy of those with Down syndrome has more than doubled -- underscoring the importance of development of treatments that will assist this population to achieve and maintain independent living."