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New Research Grant to Study Environmental and Sleep Factors in Individuals with Down SyndromeThe Down Syndrome Research and Treatment Foundation (DSRTF) has announced the award and funding for a new Innovation Research Grant, totaling $113,719, to Lynn Nadel, Ph.D., Regent's Professor, and Jamie Edgin, Ph.D., Research Associate, in the Department of Psychology, University of Arizona. The new grant, entitled "The Neuropsychology of Down Syndrome", is part of the latest DSRTF research initiative targeting expansion of the Foundation's strategy to stimulate and facilitate the most promising biomedical research. One of the primary goals for DSRTF-funded research is to accelerate development of treatments to significantly improve cognition, including memory, learning and speech, for children and adults with Down syndrome.
This new DSRTF Innovation Research Grant will allow Drs. Nadel and Edgin to further define the considerable heterogeneity in cognitive outcomes in Down syndrome. Their long-term goal is to uncover the factors that lead to variation in the cognitive characteristics (phenotype) of Down syndrome. In examining the factors relating to variation in cognitive function, they focus on the function of three specific brain regions, the hippocampus, prefrontal cortex and cerebellum. They believe these brain systems are central to the cognitive difficulties experienced by those with Down syndrome, because they are critical to everyday tasks such as attention, decision-making, and memory. Through neuropsychological methods Drs. Nadel and Edgin can establish a "window" into the functioning of these brain systems by measuring learning and behavior. They are establishing the best battery of tests, among the first such tests specific for individuals with Down syndrome, to assess the function of these brain systems, and will use this test battery in a cohort of children (ages 4-18 years) with Down syndrome to be followed longitudinally to determine development in these domains as well as the factors that influence cognitive variability. They initially intend to focus on genetic and environmental factors influencing the variability in cognitive outcomes. Drs. Nadel and Edgin will also study the impact of sleep problems on cognitive outcome. Identifying the factors influencing the variability in cognitive outcomes may be central to the formulation and development of successful treatments for cognitive difficulties in DS, including the identification of potential new therapeutic targets, and importantly, effective protocols for clinical trials.
"To effectively speed the development and delivery of new therapies requires targeted funding to address rate-limiting steps and emergent 'roadblocks' throughout the drug discovery and development process pipeline," says Dr. Michael Harpold, DSRTF Chief Executive Officer. "This new DSRTF Innovation Research Grant supporting Drs. Nadel and Edgin represents an important example because the research has significant potential to impact the earlier discovery phase, to identify new potential therapeutic targets, as well as the later, critically important translational development phases, requiring specific cognitive testing during clinical trials to determine drug efficacy in improving cognition in individuals with Down syndrome."
DSRTF has become the largest non-governmental funding source for Down syndrome biomedical research. Since its founding in 2004, DSRTF has generated more than $4 million to fund and support major new results-driven research programs. This has led to 'unprecedented' progress in identifying new potential therapeutic/drug targets to improve cognition in individuals with Down syndrome. The Foundation is dedicated to significantly increasing its annual research grants funding by continuing to build close partnerships with individuals and groups within the Down syndrome community and beyond. Our hope is that these partnerships will further accelerate the development of effective new therapies to improve cognition and create new opportunities for all individuals with Down syndrome.
To learn more about DSRTF, the research the Foundation supports and to make a donation, please visit http://www.dsrtf.org/.
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Every year United Cerebral Palsy, a national non-profit organization, publishes a report about how well states serve people with developmental disabilities. In the most recent report, all 50 states and the District of Columbia have been ranked, based on a variety of key measures connected to Medicaid funding. Texas ranks number 50, next to last place!
Along with the statistics, the report offers guidance on tactics and policy procedures to help advocacy organizations, self-advocates, families, service providers, policymakers and others take up the fight to improve circumstances in their own states.
To view the complete report, entitled The Case for Inclusion, go to www.ucp.org/Medicaid.
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has announced that new grants are available to help children who need critical health care treatment, services, or equipment not covered or not fully covered by their parents' health benefit plans.
UHCCF provides grants to families to help pay for child health care services
such as speech therapy, physical therapy, occupational therapy sessions,
prescriptions, and medical equipment such as wheelchairs, orthotics, and
eyeglasses.
Parents and legal guardians may apply for grants of up to $5,000 each for
child medical services and equipment by completing an online application at
the UHCCF Web site. Here's the link:
http://www.uhc. com/about_ us/community_ connection/ unitedhealthcare _childrens_ foundation. htm
To be eligible for grants, children must be 16 years of age or younger.
Families must meet economic guidelines, reside in the United States, and be
covered by a commercial health benefit plan.
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Washington, DC - U.S. Congressman Pete Sessions (R-Dallas) has launched the Congressional Down Syndrome Caucus with co-chairs Congressman Patrick Kennedy (D-MA), Congresswoman Cathy McMorris Rodgers (R-WA) and Congresswoman Eleanor Holmes Norton (D-DC).
"As the father of a young man with Down syndrome, I have learned firsthand the endearing and valuable contributions that individuals with Down syndrome bring to their families and communities," Sessions stated. "I am always inspired by their dedication and enthusiasm for life, and I have made disability advocacy and research among my top priorities in Congress."
"I am pleased that the Congressional Down Syndrome Caucus will champion their continued development through increased education opportunities, employment and savings options, and research to improve quality of life," said Sessions.
The Congressional Down Syndrome Caucus is designed to educate Members of Congress and their staff about Down syndrome and to promote public policies that would enhance the quality of life for individuals with Down syndrome, including through the following goals:
The Caucus will also promote the translation of Down syndrome research into effective new treatment through interdisciplinary cooperation among NIH Institutes, the FDA, the CDC and privately funded scientists and clinicians. Research support will also focus on broadening the understanding of related secondary disorders that affect significant numbers of individuals without Down syndrome, including Alzheimer's disease, atherosclerosis, and developmentally-associated cognitive impairment.
"We live in a nation that believes in providing all children with an equal chance to achieve, that every child deserves an equal chance to succeed," said Congressman Patrick Kennedy. "Early identification leading to early intervention with behavioral services provides the best outcomes for kids. We especially want to see young adults with Down Syndrome be able to make the transition to young adulthood with integrated supports to protect their best potential and highest aspirations."
"It's important for parents with a developmentally disabled child to know that they are not alone," stated Congresswoman Cathy McMorris Rodgers. "There are tremendous resources, support, and early intervention available to families. As a mother of a child with Down syndrome, those resources and support have been invaluable. I look forward to helping other parents make sure their children with Downs reach their full potential."
In addition to congressional outreach, the Caucus will work with national and local Down syndrome advocacy groups to develop leading-edge initiatives that support individuals with Down syndrome.
"I look forward to working with Congressional Down Syndrome Caucus members to raise awareness of Down syndrome issues, support research, and expand opportunities for Down syndrome population." Sessions concluded.
In the U.S., over 350,000 individuals have Down syndrome, which is a genetic condition that causes delays in physical and intellectual development. Individuals with Down syndrome have 47 chromosomes instead of the usual 46, and they are prone to health complications such as congenital heart defects, infection, respiratory, vision and hearing problems, and other medical conditions.
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A Mother's View of a Word That Wounds: RetardBy Theresa Howard, advertising reporter for USA TODAY
You are such a retard.
You've heard the expression. Sometimes it's preceded by an expletive, as in "you're such a f--ing retard." Either way, with or without the curse word, it's a harsh statement. But one, it seems, that's become increasingly acceptable. So much so that in one recent week I kept track of how many times I heard it and who said it. I heard it daily - whether it was a colleague, a neighbor talking to his dog, an actor from a hit TV show during an interview with me, a top level advertising executive, young men playfully swapping insults or Tony Soprano to his son after a botched suicide attempt.
Last year, the r-word was in the title of a Two and a Half Men episode It's a word that, unlike "pimp" or the n-word, is always derogatory. For reasons that I can't understand, pimp has become synonymous with style. The n-word, for a handful of African-Americans, is a term of endearment - until someone outside the circle uses it. Then it becomes derogatory.
But no matter how or by whom the r-word is used, it's always in a negative context. You don't hear, "What a great idea, that's so retarded." You don't hear, "Awesome catch - what a retard move."
While some are advocating that the n-word be banished from America's lexicon, who is the voice for the 7.5 million Americans with intellectual disabilities who truly are mentally retarded? Who is defending their dignity while everyday folks - educated adults at that - take a term that clinically applies to the disabled and use it as an insult?
What's my fascination with the r-word? I take it very personally. And I'm not a person who is easily offended. I am, however, the mother of a 6-month-old daughter who was born with Down Syndrome. Lydia Catherine is sweet. She's got a warm smile and very knowing blue eyes. She's got a subtle little dimple and a tiny tuft of strawberry blonde hair that swirls into one single swoop into the air.
When she looks at me, I feel like she can see all the fears, concerns, doubts and questions that swim around in my heart and my mind every day. Will she be smart enough to know when she hears people say the word "retard" that they are talking about her?
This is not new territory for me. I grew up the sibling of a Down syndrome sister. Catherine Anne was 41 when she passed away four years ago. She was born at a time when "mongolian idiot" was the operative term, and doctors suggested to my parents to leave her behind and she'd be taken care of. It really meant she would have been institutionalized. They didn't listen. Catherine lived with my parents until the day she died.
For as long as I can remember, I corrected people when they said the r-word. I flashed dirty looks to people who stared. I told parents to tell their child that it's not polite. Ever gregarious, Catherine would smile at strangers, many of whom would be so uncomfortable that they didn't know what to do. Even after Catherine passed away, I continued to correct people for a few years. Then I got tired. I no longer felt it was my battle.
Until Dec. 10, when Lydia was born. My journey has begun all over again, this time with me as the mother and my older daughter, Sofia, as the sibling. If I was protective of my sister, I am almost scared of how protective I will be for Lydia and her own sister. But as she grows up in a time when "retard" is a socially acceptable slur, professional organizations are trying to change the clinical term. Last November, the American Association on Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities. The Special Olympics is advocating that "retarded" be dropped from the vernacular.
Fixing the terminology is only a start. The bigger issue is acceptance of people with disabilities.
Do your part. Don't stare. Say hello. Be inclusive. And when you want to insult someone's intelligence, remember to use a different word. Back To Top
NDSC American Express Members Project
Dear Friends,
The National Down Syndrome Congress has an exciting opportunity and you can help us secure it to the benefit of all people with Down syndrome and their families.
We have been notified that an NDSC initiative has been named one of 50 finalists as an American Express Members Project. NDSC member Sandra McElwee approached the NDSC about the project; NDSC Board member David Forney wrote the successful entry.
If we succeed in the selection process, we may be awarded up to $5 million to promote Down syndrome awareness.
To get to that, our project must make its way through three rounds of voting by American Express Card Members.
The first round began July 3.
You will find a description of our project below. If after reading it - and if you are an American Express card member - you can help by going on line to http://www.membersproject.com/intro.htm and following the instructions to vote for the NDSC project titled: Awareness Can Build a Family
You can help us even more by forwarding this email to all the people on your contact list - to other family members, friends and associates -- one person we know intends to alert her entire church congregation!
Send it to everybody you think might care about people with Down syndrome and ask them to vote for Awareness Can Build a Family.
With your help, we can mobilize thousands of people and, in the end, gain essential funding for our campaign to make the world aware that people with Down syndrome are "more alike than different."
That is the theme of our campaign and here's the way it is described with American Express:
Awareness Can Build a Family
Yearly, thousands of women are tested to determine if the child they carry has Down syndrome. A positive answer often portrays a bleak future in which their child will impose terrible burdens and dreams die.
Many medical professionals have scant knowledge of Down syndrome and are unable to comfort or educate.
Their messages tag people with Down syndrome as having no value, implying there is no place for them in our world.
The tragic result: an astonishing 90% of pregnancies involving diagnosis of Down syndrome are terminated.
In fact, there is much to celebrate. Children with Down syndrome excel in school, participating in sports and graduating. As adults they live independent, rewarding lives. Ask a parent - you will hear of joy, fulfillment.
My Members Project, "Awareness Can Build a Family," would use public service television, ads, booklets and more to tell that people with Down syndrome are more like all of us than not and are of priceless value.
If you agree with all of that, please vote as soon as possible - the first round closes July 15, 2007 Back To Top
Social Research Dissertation Study
A doctoral student of sociology at Boston College is looking for mothers of children with Down syndrome of all ages who would like to talk about their experience of having and raising their child with Down syndrome. The primary aim of the study is to shed light on the ways families experience and make sense of their child's condition.The interviews are preferably conducted in person at locations most convenient for the participants. If you would like to participate in this study, please contact Dana Cervenakova Ahern at dsstudy@gmail.com or call 617-256-6192.
Please log on to the Massachusetts DSC website at www.mdsc.org to learn more about this research study. Back To Top
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