Tags Posts tagged with "Community Spotlight"

Community Spotlight

At 26 weeks of her pregnancy, this mom knew her baby had serious health concerns. Baby Mayana’s ultrasound was showing her intestines were not...

I love coming home. Don’t get me wrong, I get a great deal of satisfaction from working a solid day, but I really appreciate...

Batten disease is one of the rarest diseases in the world. In fact, it only affects about two to four out of every 100,000...

If you've ever been curious about muscular dystrophy, now is the time to learn because August is Muscular Dystrophy Awareness Month! Chances are, even if...

I attended the 2017 CRN Family Conference in Utah this July. As someone living with rare disease who is older, (I am in my early...

There are certain doctor’s appointments that I dread. The top three appointments that can cause me to lose sleep include annual OB/GYN visits, mammograms,...

When I was in my 20s and 30s, I performed in a lot of musical theater performances— “Music Man,” “Big River,” “Carousel,” “You’re a...

According to the AKU Society, Flavia was only a few weeks old when her parents noticed that her urine had stained her diaper an...

Inspiration is everywhere—from the words of your favorite writer to the blooms and leaves on your morning walk. You just need to open your...

Orphan drugs, for those of you who don’t know, are those designated especially for rare diseases. They respond to a public health need, but not...

If you remember reading our story on 12-year-old Markie DeVoe and his choroideremia, we have an important update for you. If you haven't read...

If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all...

You've got to be dedicated to train for a marathon. When Brit Joe England signed on to raise pounds for the Alkaptonuria (AKU) Society,...

You’re more likely to recognize his voice rather than his face. If you love segments like “Food News with Froggy” or “Phone Taps” from...

Waldenstrom macroglobulinemia (WM) is a devastating form of non-Hodgkins lymphoma. Specifically, this cancer starts in the B cells of the body (B lymphocytes). Waldenstrom's...

It started out harmlessly enough—a Greatest Loser- type competition between co-workers. Everyone who wanted to participate put in $10, weigh-ins would be weekly, and...

Imagine if every time you stood up your world would start spinning, your vision would blur, and you’d faint or fall down. Prolonged exercise...

The latest in Waldenstrom macroglobulinemia news comes not only from the hospital clinic, but also from the race track, and the dance floor! As for...

Medical malpractice. These two words strike fear into the hearts of millions of doctors all over the world, but especially in litigious societies, such...

This is not a warning, but some friendly advice: Start planning for next year and mark your calendar for February 28, 2018—it’s world Rare...

Have you ever noticed how frequently things get compared to the same small group of ideas? When trying to point out that something isn’t...

In the mid-1990s, many in the United States were first exposed to the somewhat strange juxtaposition of choreographed leg flailing and still upper bodies....

There’s a lot that the marginal zone lymphoma community needs, but there is also a lot being said. Results from clinical trials are coming...

Peer pressure. Celebrity endorsement. Expert testimony. Gut feelings. Impulsivity. Shared experiences. People do a lot of things for a lot of different reasons. Ad...

Edgar Allan Poe’s idea of perfect beauty is frequently associated with living life to its fullest in a short period of time and dying...