It all started at my son’s wedding as I watched one of his groomsmen swaying at the altar, attempting to stay upright. As soon as the ceremony was over, we found him stretched out on a bench in the lobby. What followed was months of recovery, neurological tests, and consultations. He finally got the diagnosis: Parsonage-Turner syndrome, a rare disease of a group of nerves that runs from the spine through the neck and into the arm. |
On Monday, February 28, the National Institutes of Health (NIH) will celebrate Rare Disease Day. The celebration will be on the main campus in Bethesda, Maryland. Attendance is free and open to the public. It’s one of the many ways NIH draws attention to our country’s 7,000 rare diseases. If fewer than 200,000 people in the U.S. have a disease, we consider it rare. About 80 percent of the rare diseases are genetic, and about half of them affect children. By raising awareness about these diseases, NIH shines a bright light on these often mysterious and underdiagnosed disorders.
The NIH Offices of Science Education and Rare Diseases Research are looking forward to the summer release of a new curriculum supplement for grades 6 - 8 that explores scientific inquiry through the study of rare diseases. Stay tuned for an announcement of its release in coming months!
For more information:
Rare Disease Day at NIH
Rare Disease Day all over the world
We’re excited about “The King’s Speech,” a new movie that’s drawing attention to the complexities of stuttering and the availability of hope, treatment, and support. It tells the story of how King George VI, father of England’s Queen Elizabeth, seeks speech therapy for his stuttering and courageously addresses and inspires his country at the onset of WWII. It’s been nominated for a dozen Oscars!|
Something else exciting is happening that may begin to lessen some of the misunderstandings around stuttering and open up new treatments. A genetic link to stuttering has been discovered by researchers at NIH’s National Institute on Deafness and Other Communication Disorders (NIDCD) and published online in the New England Journal of Medicine. The findings suggest that this common speech problem, in some cases, may actually be an inherited metabolic disorder.
“This is the first study to pinpoint specific gene mutations as the potential cause of stuttering, a disorder that affects 3 million Americans, and by doing so, might lead to a dramatic expansion in our options for treatment,” says James F. Battey, Jr. , director of NIDCD.
One of the authors of the study, Dennis Drayna, recently told elementary school students in a Q&A session, “Stuttering typically starts in young children who are 3 or 4 years old. Most of these children, about 75 to 80 percent, get over stuttering naturally and never stutter again. In the rest of those children, stuttering can go on for years, sometimes for their whole life. But even for those people, speech therapy can be a big help, and sometimes it can help them stop stuttering forever.”
Check out Dr. Drayna’s full Q & A session and other resources for people who stutter, their families, and teachers (including a free Web-based video and handbook) at The Stuttering Foundation Web site.
Here’s more about an important first step in developing a treatment for stuttering:
--Feature story in the NIDCD Newsletter
--NIH Press release
--Study abstract on Pub Med
By: Margaret | February 2 2011 | Category: NIH Resources, Tidbits for Teachers
Many of my friends made New Year’s resolutions about losing extra pounds gained over the holidays. I bet few are focusing on the connection between what we eat and our dental health, though. February is a great time to make that connection as it’s National Children’s Dental Health Month. We can all help kids develop good habits now … and teaching them about the science of tooth decay is a good place to start.|
There is a tug of war going on inside our mouths. On one team are dental plaque plus food, especially sticky foods and drinks containing sugar. On the other team are the minerals in our saliva plus fluoride from toothpaste, water, and other sources. When we eat or drink something sugary, the bacteria in dental plaque produce acids that begin to eat away at tooth enamel. Frequent exposure to sugar can lead to tooth decay because our mouths have to fight off repeated acid attacks.
But did you know that the tooth decay process can be interrupted and even reversed? Here are some helpful resources about that:
Please help us spread the word about these resources, and let us know if you have some good ones to recommend about preventing tooth decay!