Have you ever googled the word "precision"? Words linked to turbine engines, long-lasting tires and even industrial cameras pop up. But, what I didn’t see was anything related to precision…
Knowing you’re not alone and connecting with others who share the same experience with Dravet syndrome can be incredibly valuable. Parenting a child with such a specific set of symptoms…
How often do you reflect upon all the genuine reasons to be grateful? What prompts you to shift your focus from the sense of self to others? Do you find…
No one likes being sick, yet Mom always finds a way to turn this rough situation into a special feeling. Mothers have a way of taking care of you physically…
Raise your hand if you like Adele, the English singer-songwriter! Well, hopefully, your hand is raised, but if not, that’s okay too. I’d still like you to consider Adele’s actions…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
We've all heard it before: "Stay positive! Look on the bright side! Don't let the little things get you down!" The fact of the matter is it's way easier to…
Quite possibly, one of the most challenging attitudes to embrace is self-compassion. It should be easy enough to adopt simple self-love into our lives, but it truly is where the…
If you are living with myasthenia gravis (MG) or any other rare disease or medical condition, you may have the travel bug, and travel insurance may be worth the investigation. Let’s…
When you need help with a problem, where do you turn? Many people these days turn immediately to the internet. From Googling to settle a bet to researching a doctoral…
Stepping on a Lego—that piercing pain is familiar to just about everyone, and it hurts an unreasonable amount. You step on other things all the time, but Legos seem to…
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!).…
My 4-year-old son went through a phase a few years ago where he had to clarify everything he said. “Momma, that car was blue. It wasn’t green. It was blue.”…
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…
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 eyes, and breathe it in. Sometimes, inspiration just…
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 Disease Day! It’s the day that…
What do you think of when you hear the word “family?” You may consider your parents, siblings, grandparents, aunts, and uncles. No matter whom you include, we all share one…
Let’s talk clinical trials. Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat…
Friendships may come and go, but you’re stuck with your sibling. This relationship is oftentimes one of the longest relationships in a person’s life. Our siblings are our family tree.…
The United States' Orphan Drug Act (ODA) was enacted in 1983. Years later, it has failed to fuel the creation of orphan drugs to treat rare diseases, including spinal muscular…
Please. Take just five minutes out of your day to read about this SUPERBLY inspirational mom from Australia whose son has juvenile idiopathic arthritis (JIA). Yes, I’m begging but it’s…
Learning as much as you can about your diagnosis is the first step toward empowering yourself to take control of your life and make decisions that will help you live…
There’s no question that when life gets chaotic, your health is often impacted. It’s important to maintain a healthy balance for eating and living. Especially if you have hemochromatosis. Hemochromatosis…
I recently got together with a sweet friend, who has a six-month-old. It was the first time we'd actually talked face-to-face since her daughter was born, and the first time…
You’ve been diagnosed with pulmonary arterial hypertension (PAH)… now what? Although there is currently no cure for pulmonary arterial hypertension, there are treatment options available and more are on the horizon.…
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