Growth spurts? As an overachieving parent, I couldn’t get enough of them. I was the kind of mom who wanted to remember each and every step toward adulthood. I didn’t…
Damien took a lot of naps. I mean, a lot! It’s true; he was a very active Doberman Pinscher. He fetched everything—tennis balls, Frisbees, shoes that hadn't been put away—you…
The Familial Hypercholesterolemia Foundation's main mission is to raise awareness of familial hypercholesterolemia (FH) to the public. As part of this goal, the FH Foundation annually hosts Familial Hypercholesterolemia Awareness…
One of my favorite places to visit is Savannah, Georgia. And what better reason to visit than an spinal muscular atrophy (SMA) charity event? Who: SMA Angels What: SMA Angels Charity Ball…
Sad news today as the world mourns comedian and Muscular Dystrophy Advocate Jerry Lewis' death. The director/producer died at the age of 91. Jerry Lewis was a 1960's movie star…
Most kids love robots. So the idea that a kid with cerebral palsy (CP) could improve the way he or she walks with the help of a robot is just…
If you’re anything like me, you probably don’t remember much about the work you did 20 years ago. And unless you’re a pack rat, chances are you can’t even lay…
As a child of the 70s and 80s, I’ve lived long enough to see my geeky obsessions burst out of the shadows into mainstream pop culture and profitability. Take comic…
Happy Friday! This week, we have an inspiring story about a woman who is battling cystic fibrosis but she's river dancing her way through it! We also have some news…
The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of…
Whenever it comes to a controversial issue, I always ask myself: Who benefits? In most cases, it’s not all that hard to figure it out. But sometimes, it seems like…
Gene therapy is rapidly shaping up to be the next stage in the evolution of treatment for a wide array of conditions. And it makes sense: rather than treat the…
This August, it’s time to spread the word about a rare disease that may not be that rare after all. It’s called autoinflammatory disease and is actually a category of…
Dorothy was spot-on: There’s no place like home. As we journey through life―dodging the occasional wicked witch―it’s comforting to know that a cozy bed, loving arms, and perhaps even a…
Hereditary Angioedema, or HAE, is an extremely rare genetic condition. Patients with HAE experience swelling under the skin in possibly many different parts of the body. Individuals with HAE do…
In 1901, a German ophthalmologist named Karl Stargardt reported the first case of macular degeneration in a child. Today, we know this is very rare in children. Approximately one in…
Primary immunodeficiency diseases (PI) are a group of more than 300 rare and chronic disorders where part of the body's immune system is missing or does not function properly. Since…
Right up front, I'll admit I’ve done this: You’re in a parking lot looking for a parking space when you pass a handicapped spot. You see the placard that gives…
Hema Biologics have recently released something even cooler and more inventive than just their traditional hemophilia treatments. They are way on top of their game and know exactly how to…
Happy Friday! This week, we have a story that might break your heart about a woman who battled cystic fibrosis. But we also have a story that might inspire you about a…
Most things have multiple functions. The tire iron you use to jack up the car when changing a flat tire? It can be used as a self-defense weapon if an…
August signifies the beginning of the end of the summer season and the start of school again, but it is also a month of spreading awareness. Specifically, gastroparesis awareness. Gastroparesis is…
So I don’t think it will surprise anyone to learn that people living with mental illnesses like schizophrenia or bipolar disorder have to put up with a huge ration of…
Don’t eat that! Eat this instead. Some diets recommend low fat. Some endorse high protein. Some forbid carbohydrates. Some praise those same carbohydrates. Some limit fiber. It’s so confusing figuring…
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 the former, latest results are…
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