Sometimes I muse considering the first person to pioneer certain things. For example, who looked at mushrooms growing out of a decaying log and thought: “Yum”? Or how about the person…
I think it’s safe to say most people probably dream of making the world a better place in some way. Many of us are able to do just that by…
Fifteen is such an awkward age. Your body is growing; you might not have gotten past the clumsy, gawky, gangly stage yet. You’ve started to look at the opposite gender…
Alfred, Lord Tennyson wrote, “’Tis better to have loved and lost than never to have loved at all.” This may be true for love. If you have loved before, you…
Food allergies are nothing new. For two decades, the portion of children with a peanut allergy has essentially tripled. Eggs. Soy. Wheat. Fish. Onions... They’re all common food allergies. Besides…
According to the Daily Mail, 18-year-old Lewis Nickell from Northern Ireland has Tourette syndrome. The condition is characterized by a mixture of voluntary noises and movements referred to as tics.…
Whether it’s hiking the rainy hills of Kauai, sleeping over the water in Bora Bora bungalows, exploring inside Neuschwanstein Castle in Germany, or looking over the picturesque Matterhorn, there are…
Leave it to a sports award show to recognize what a real fighter looks like. ESPN's annual award show (the ESPYs) honored 15 year-old Jarrius Robertson last week with the…
One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease. Some people run 5Ks, some people go…
Each year on the very last day of February, Jeff Leider makes a detour on his Hunter syndrome (mucopolysaccharide II) journey to travel from his home state of New Jersey to Washington…
In the span of five years, 3-D printing has taken off. What was once a hopeful idea for the future is now a common amenity in universities, a toy for…
Scotland’s Aaron Hunter went on Twitter to challenge the one and only Iron Man. He asked him for help with raising funds and awareness for rapid-onset obesity (RO) with hypothalamic dysregulation…
If you're a millennial, or if you are close to a millennial, or actually if you just have a social media presence at all, you have probably heard of the…
Abigail, a fifth grade student, originally took a trip to the Capitol to advocate for more research on tuberous sclerosis complex (TSC). The trip had unexpected results. As the Daily…
Over ten years ago, four close friends founded a charity called Angie’s Hope. One of the founders, Angie Lee, has been living with spinal muscular atrophy (SMA) since she was…
Baby Dylan had some sort of medical condition, as reported by The Global and Mail. His family was sure of it. He slept all the time and when he was…
Every rare disease patient deserves an organization dedicated to working towards their specific condition. These organizations provide invaluable patient advocacy, information, support, and research funding for small communities that need…
I recently read a report on the inspirational Lakiea Bailey, who has a rare disorder called sickle cell anemia. This disorder targets her red blood cells. Sickle cell diseases can…
According to Seacoast Online early this year, Cohl Capparelli was diagnosed with spinal muscular atrophy (SMA) about two years ago. SMA is one of the diseases that the Muscular Dystrophy Association…
What you’re about to read may sound like fiction. I promise you, it’s not. Two men from Tanzania had their boat capsize while fishing in the Indian Ocean a few…
Kumail was diagnosed with spinal muscular atrophy (SMA) and started Spinraza in an international trial. As The Herald Sun reports, he began the treatment at six weeks old before he…
No two patients a doctor sees will ever be exactly alike. They all will have different symptoms, allergies, and conditions, in addition to different backgrounds, personalities, and identities. While you…
According to SBS Australia, Duncan Whitcombe and his son Bailey are both living with a rare neurological condition: Tourette syndrome. Duncan has had Tourette's since he was 10. At that…
According to Port City Daily, 21-year-old Haley Swanson has been living with dermatomyositis for 10 years. She was diagnosed at age 11 with the autoimmune condition, which means that her…
It is easy to feel alone after being diagnosed with a rare disease. You are surrounded by others that can only empathize so much with what you are going through,…
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