Tag: Advocating for Others

Supporters Unite to Color The World Orange for CRPS/RSD Awareness on Nov. 6

Get your orange ready! The fourth-annual Color The World Orange on November 6 is almost here. Color The World Orange is an annual event held the first Monday of November to spread awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). On November 6th, supporters around the world will wear orange…

#WEGOHealthAwards Winners Series Podcast: Tory Aquino

There are many reasons Patient Leaders get involved in advocacy, Tory's just happens to be her daughter.  Tory's  daughter, Mariah, was active and full of energy from birth, so it was alarming when her daughter started complaining of joint pains and suddenly became inactive at age four.  The cause of Mariah’s suffering was a mystery…

Feature Friday: Morgan Gleason, Rare Disease Patient Leader

Do you remember being eleven years old? Most of us can only recollect things related to braces, cooties and the playground. Morgan Gleason however, has a different story. Her family knew Morgan to be a normal kid- she spent time with friends, was active, and participated in cheerleading. Then one day Morgan began to notice…

Webinar: How To Be An Empowered Advocate

You were just told that you or a loved one has a health condition or a disability - now what do you do? Once you get over the denial phase of the diagnosis, only then can you start advocating. Only then can you begin to look for the best healthcare providers, to provide the best…

Feature Friday: Martinus Evans – Obesity/Weight Loss Patient Leader

After 20 weeks of physical therapy for a hip pain, Martinus Evans visited an orthopedic specialist hoping for some answers. “Mr. Evans, it’s because you’re fat and you need to start walking and losing weight.” Although shocked and embarrassed, Martinus’ response was clear. Screw walking, I’ll run a marathon. His doctor said it was the…

Tardive Dyskinesia Side Effect, Not Side Show.

Have you ever felt that you were the one patient who just couldn’t be helped? That was my mindset three years into my search for relief from Tardive Dyskinesia. My only saving grace at that point was my husband; he didn’t entertain that thought and wouldn’t let me. We were both up every morning at 5am, googling…