A recent headline gives cause for celebration:
New NIH grant awards boost funding for research on Down syndrome (September 5, 2019).
Continue reading New Research Funding Supports ONE Study Aimed At Racial Disparities
Category Archives: Research
Get Moving! Research Shows We Are Inactive
A new study released in the Journal of Intellectual Disability Research looks at levels of physical activity in parents of children with and without Down syndrome. Continue reading Get Moving! Research Shows We Are Inactive
More Choices: Let Your Voice Be Heard
We’ve talked about sub-minimum wages and the debate surrounding so called “sheltered workshops” several times. We settled on a position that acknowledges the needs of adults with Down syndrome and their caregivers:
The good news is that there is a new online information gathering tool sponsored by the U.S. Department of Labor.
It’s called the Section 14(c) National Online Dialogue.
The website includes basic information about the rule that allows some employers to pay sum-minimum wages.
Section 14(c) of the Fair Labor Standards Act
Since 1938, Section 14(c) of the Fair Labor Standards Act has authorized employers, after receiving a certificate from WHD, to pay wages that are less than the Federal minimum wage to workers who have disabilities for the work being performed.
Employers must have an authorizing certificate from the Wage and Hour Division of the U.S. Department of Labor and pay is based on individual productivity.
The site is open to all stakeholders including “individuals with disabilities, their families, providers, disability organizations, employers, researchers, and other(s).
“The goal of this online dialogue is to capture perspectives about Section 14(c) based on individual input from those “on the ground.”
Once you have registered you can give feedback in one or all of the three topics.
- Use of Section 14(c) certificates and observed trends
- Experiences transitioning from the use of Section 14(c) certificates
- Vision for the future of work and workplaces; the landscape over the next five to ten years
We hope all families who have experience with this type of employment will step up and let their voices be heard about the benefit of having more choices when it comes to employment.
Visit the online dialog at http://bit.ly/AboutChoice
The site opened Monday, May 20th. We’d love to hear about your experience with the site!
#MoreChoices #UseYourVoice #BeHeard
I Can Be a Father (With Down Syndrome)
Has your son who’s 5’ 4” (or shorter) told you that he’s going to be an NBA player? Has your beautiful daughter who has weak ankles and knees spoken to you about her dream of becoming a prima ballerina? Does your son who has absolutely NO rhythm and can’t carry a tune in a bucket proclaimed himself to be a bona fide rock star?
That last one is mine. My son has identified himself as a rock star since he was a toddler. I’ve decided to go along with the dream even though I cringe a little every time he sings. That’s what moms are for – to help their children do whatever it takes, within reason, to achieve their goals. He’s also demanded at different times that he’s going to be president, the King of bowling, and a WWE superstar. I agree enough to give him self-confidence but we both know none of those things are likely to happen.
It’s one thing when the dreams children dream aren’t feasible because their bodies just aren’t built that way. Not everyone can be a professional athlete or leader of the free world. [Not going there but wouldn’t it be nice if someone with Down syndrome ruled the world.]
But what about when the dream is physically possible, but not “socially acceptable?” Continue reading I Can Be a Father (With Down Syndrome)
All About Dental Care: Death, Research and Advocacy
The news story
A terrible story hit the news recently. It involved a young man who had Down syndrome who died after receiving dental care. The family of the man has been waiting for justice for four years.
We see too many stories like these: ones involving innocents who die at the hands of people in power who we trust with our loved ones. These stories make us wonder if we are doing all we can to protect our loved ones and the rest of our community. Continue reading All About Dental Care: Death, Research and Advocacy
April A to Z Blogging Challenge: Karyotype
Advocacy around research is important, especially because Down syndrome is the least funded genetic condition by the National Institutes of Health (NIH). Continue reading April A to Z Blogging Challenge: Karyotype
Debate Over Study on Antidementia Drugs for Adults with Down Syndrome and Alzheimer’s Disease
In March 2018, 21 researchers published a study in the British Journal of Psychiatry called “Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study.”
The researchers noted that there have been few studies conducted, and therefore little information is available on how to treat adults with Down syndrome and Alzheimer’s disease. They set out to test specific antidementia drugs on people with Down syndrome and Alzheimer’s disease. Continue reading Debate Over Study on Antidementia Drugs for Adults with Down Syndrome and Alzheimer’s Disease
New Study on Bone Mass in Adults With Down Syndrome
Intellectual and Developmental Disabilities
Volume 55, Issue 5
(October 2017)
Bone Mass Assessment in a Cohort of Adults With Down Syndrome: A Cross-Sectional Study
Article Citation:
Ramón Costa, Rosa De Miguel, Clara García, Diego Real de Asúa, Santos Castañeda, Fernando Moldenhauer, and Carmen Suárez(2017) Bone Mass Assessment in a Cohort of Adults With Down Syndrome: A Cross-Sectional Study. Intellectual and Developmental Disabilities: October 2017, Vol. 55, No. 5, pp. 315-324.
| Abstract |
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Differences in bone mineral density (BMD) have been observed between adults with Down syndrome (DS) and the general population. The purpose of this article is to describe the prevalence of bone mass disorders in a cohort of adults with DS and their predisposing factors. We performed a cross-sectional study of 104 consecutively recruited adults with DS from an outpatient clinic of a tertiary care hospital in Madrid, Spain. We recorded epidemiological and anthropometric data, nutritional variables, coexisting clinical conditions, and laboratory variables. BMD was measured at the lumbar spine, total hip, and femoral neck using dual-energy X-ray absorptiometry. The prevalence of osteopenia ranged from 48% to 52%, and that of osteoporosis ranged from 19% to 22% depending on the site of measurement (femoral neck or lumbar spine, respectively). Age was the greatest risk factor associated for lower BMD, with similar bone mass accrual curve but with lower peak of BMD than the general population. We conclude that low bone mass is an extremely prevalent condition in adult patients with DS.
Keywords: Down syndrome, osteoporosis, bone mineral density, bone metabolism
Zestful Data on Community Employment
We hope you’ve enjoyed our series on employment for people who have Down syndrome! For our final post, we bring you some encouraging stories and zestful employment data that we hope will encourage those looking to support a loved one who’s looking for a job.
National Statistics on Disability and Employment
Today we’ll look at the numbers on disability and employment from two different entities that focus on this issue.
Continue reading National Statistics on Disability and Employment