According the Cystic Fibrosis News Today, when Claire was first born, she was only expected to live to the age of 10. Then Claire’s life expectancy lengthened to 18, and…
Among the many uses of social media, medical diagnosis for rare diseases, for everything from acromegaly to Zellweger spectrum syndromes, may not be the first that comes to mind. But…
A recent survey of more than 150 idiopathic pulmonary fibrosis (IPF) patients demonstrates the invisible burden the rare disease causes. It is no secret that any rare disease has the…
According to an online article from PRI, there is a terrible injustice being meted out to people with albinism in Tanzania. Upon birth, their limbs have price tags on them,…
When I was in second grade, a boy named George accidentally ate a peanut M&M and turned bright red. We thought he was choking. This was in the 1975, when…
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…
Back in 2015 I was diagnosed with POTS, a form of dysautonomia. Dysauto-what? Yeah, exactly what I was thinking. After doing all my research and being super upset at what…
While there is good scientific evidence backing up the fact that omega-3 fatty acids found in fish oil can help slow or even prevent heart disease, but does fish oil…
Milestones. Oh, the firsts! When you have a new baby, your whole life revolves around firsts: first bath, first smile, first tooth, first roll, first uninterrupted night of sleep (yes!).…
Over the years, I've talked with dozens of people with Parkinson's disease (PD). Male or female, old or young, they tend to have one characteristic in common, even if they…
Ron Taylor is a smoker who has the lungs of a 126-year-old man. According to the Alpha-1 Foundation's website and the Memorial University Gazette, his diagnosis started when he went…
October is a time for celebrating autumn and Halloween in the US. But it's also Gaucher Disease Awareness Month! Mark your calendars for this Gaucher Disease event: Who: The National…
I am a firm believer that amidst all the fads that come and go, there is one trend that will always be popular. This, of course, is the do-it-yourself craze…
Another great breakthrough in research science! A new study found that an experimental drug combined with the traditional chemotherapy drug cisplatin successfully eliminated a rare salivary gland tumor and prevented a recurrence…
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…
I have worked in the healthcare industry for thirty years; the past eighteen as a specialist nurse. In all those years I have never once heard of SD. Diagnosis is…
As autoimmune disorders become an increasing problem throughout the world, particularly in developed countries, there has been an increasing amount of research dedicated to finding a cure, and the role…
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…
Recent studies have shown promising results that cannabidiol (CBD) helps relieve different forms of epileptic seizures like those from Lennox-Gastaut syndrome and Dravet syndrome. Lennox–Gastaut syndrome (LGS) is particularly severe, childhood…
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…
The Liv-A-Little Foundation is painting the town purple this August in the name of cystinosis awareness! Cystinosis is a genetic disorder that causes the build-up and crystallization of the amino…
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…
In breaking news for the progeria community, biomedical engineers have just succeeded in growing miniature human blood vessels that mimic progeria, the ultra-rare genetic condition characterized by premature aging in…
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…
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