A new study published in the American Journal on Intellectual and Developmental Disabilities asks parents how they feel about methods of mitigating or preventing symptoms of Down syndrome.
Continue reading Would You or Your Loved One Want a Cure for Down syndrome?
Sometimes research answers questions you didn’t know you had.
Continue reading Got Milk? Or Water, Lemonade, Fruit Juice Maybe?
A group of scientists headed by Dr. Marie-OdileRethoré from the Institut Jérôme Lejeune, recently published a new proposal for cancer screening guidelines for the Ds community.
Based on the fact that people with Ds are affected by cancer differently than those without – for example they get solid tumors half as much – these doctors suggest changing the way doctors perform cancer screening tests.
The specific tumor profile in DS warrants an adapted screening program for breast, colon, cervical and testicular neoplasia.
- “We propose that adults with DS should participate in colon cancer screening.
- For women with DS, breast cancer screening is not recommended, but annual clinical monitoring should be conducted, with the option to perform ultrasound or MRI examination in suspect cases.
- For cervical cancer, screening could be proposed to women who are sexually active beginning at age 25 years.
- Annual surveillance for testicular cancer via palpation by a health professional is preferable from ages 15 to 45.
- In case of additional genetic predisposition in a person with DS, a surveillance similar to other family members is recommended.”
A recent headline gives cause for celebration:
Continue reading New Research Funding Supports ONE Study Aimed At Racial Disparities
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
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.
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.
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
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)
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
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
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
