Search Results for: Our story

The limitations of genetic testing: how a mom was told her son with Down syndrome would run the New York City marathon

Visit NBCNews.com for breaking news, world news, and news about the economy This past weekend was the New York City marathon. Among the 50,000 runners was Jimmy Jenson, who no one could have expected he would be there on the day he was born.  Continue Reading

We are all uniquely written (not like a set of encyclopedias)

In 2008, I attended the American Congress of Obstetricians & Gynecologists (ACOG) annual convention where the keynote address compared our genetic code to a set of encyclopedias. Here's how newer genetic testing is rewriting this metaphor for who we are. Continue Reading

What’s the point of Down syndrome awareness?

October is National Down Syndrome Awareness Month. But, what's the point of raising awareness about Down syndrome? Continue Reading

Hollywood comes to a Down syndrome Walk

October is National Down Syndrome Month and each year group's around the country hold their charitable walks to raise awareness. Here's how Hollywood came to Down Syndrome of Louisville's Walk. Continue Reading

Equal justice under law, no matter how many chromosomes

In January, a 26-year old man was killed outside a movie theater while being restrained by off-duty police officers. His crime: not paying for a movie ticket. Why isn't more known about what caused this homicide?  Continue Reading

“Monstrous” Sonic Hedgehog Reverses Down Syndrome

Finishing up on the news about the research that reversed Down syndrome-genes in genetically-engineered mice with a single injection to the brain. I recalled reading about the agent used in the treatment that had a different, and more concerning, impact. It's another reason why I would think twice before injecting it into a newborn's brain.  Continue Reading

“Is that a man?”–HuffPostLive discusses prenatal testing for Down syndrome

Tuesday, HuffPostLive featured a discussion on prenatal testing for Down syndrome. You can watch the video at this link. Part of the discussion made me think of a very bizarre story from our past.  Continue Reading

Non-Invasive Prenatal Screening is not the Holy Grail, and it’s wrong to call it that–Part 2 of 2

In yesterday's post, I covered why it is factually wrong to call Non-Invasive Prenatal Screening (NIPS) the "Holy Grail" of prenatal testing. Here's why it is ethically wrong to call it that. Continue Reading

Enjoying the small things: from the diagnosis to now 3 years old by Kelle Hampton

Three years ago, Kelle Hampton burst onto the scene with a telling of how her daughter's diagnosis of Down syndrome was delivered. In a recent post, she shares how her daughter's doing now and what they've learned. Continue Reading