How Narcolepsy Summer Camp Helps Kids Live a Better Life
The main goal of any well-run camp program is making sure children have the time of their lives, and for one summer camp in Kentucky, their goal is to provide…
The main goal of any well-run camp program is making sure children have the time of their lives, and for one summer camp in Kentucky, their goal is to provide…
Life has its obvious defining moments: graduation, our first house or apartment, falling in love and getting married, seeing loved ones pass, memorable trips, finding success, experiencing failure. The list…
With a title about courage, you might think that I am going to write about facing fierce enemies, not running from brutal battles, and boldly standing on blood-stained ground in…
If you’re like most people (especially me), you’ve never heard of nicotinamide riboside (NR) before. But that may change very soon, especially for the Duchenne muscular dystrophy (DMD) community. What…
Since a young age, many of us have searched for something—a hobby, a passion, a quirk—that "defines” us. Much like the pursuits of Angela Van Batavia, a middle school teacher,…
Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting…
If you're a dog owner, you probably already know just how awesome dogs are. They fill your life with love, loyalty, fur, and plenty to smile about. For one little…
It is more blessed to give than to receive, and one man who lives with glomerulonephritis (GN) knows all too well how helping people and doing a good deed out…
It’s tough to be productive in our daily lives when anxiety and worry are dominating our thoughts, and if you or someone you love lives with aplastic anemia (AA), then…
Nice guys finish last? Hardly. Especially if we’re talking about Vanessa Smith, a mother of six, and Peter Brouwer, a father living with primary sclerosing cholangitis (PSC) who needed a…
Whenever we’re struggling with something, we assume we are alone. We feel like we are the only ones. But in September of 1997, a small group of Friedreich’s ataxia (FA)…
Are you living with primary sclerosing cholangitis (PSC) and looking for a suggestion on dietary improvements? If so, there may be help navigating your options (I know there are many). I…
The history of the world stands on the importance of community. No sole genius alters the pages of time without some kind of support group, and the Parent Stories from…
How do you feel about your life today? Are you living every day in exuberance? Do you love what you’re doing? Are you excited every single moment? Are you looking…
If we can accomplish big dreams, why wouldn’t we go after them? Just like Hannah Aspden of Raleigh, who was born without her left leg and lives with postural orthostatic…
Maybe we should chart our own course in life like one sweet baby girl who was born with a rare skin disease called Epidermolysis Bullosa. Little Joella lives with the…
Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…
Child development is natural and to be expected. Parents look forward to these milestone moments and usually remember every detail from these times. First word. First steps. One after the…
The courage and persistence to keep going, past hurdles and obstacles, is powered by purpose, and for one woman living with Pompe disease, her purpose is to overcome barriers to…
Life can be overwhelming, especially when living with complex regional pain syndrome (CRPS). The continual pressure to look good, to perform well, and to compete for wealth and affection creates…
“Motherhood is the hardest job you’ll ever love.” I’m not sure who first coined that phrase, but its truth becomes clearer to me every day. And nowhere is that truth…
Do you live with Complex Regional Pain Syndrome (CRPS)? Are you looking for inspiration from someone with experiences like yours? Well… Katelyn (Katie) O’Leary, a 27-year old Indiana native living…
Not everyone can appreciate a sarcastic sense of humor. And for whatever reason, this dry sense of humor usually comes with a warning. So this is yours. Please be advised…
It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…
When we need it most, stories can inspire, encourage, and quite frankly, make us feel good. Especially if the story is about a super cute little eight-year-old girl who was…