Electronics - Benton, AR, US
Awareness about rare-diseases is vital to promote. Too often we think of our disease as a negative factor without understanding the inspirational power it provides us. I view my condition as a bittersweet gift. By spreading awareness and normalizing "differences" we bring awareness to our specific illness. We are our own brand.We often feel helpless against our diseases. We could look at our personal situations in a different light however, the truth is, everyone is hurting somehow. Everyone has a "wheelchair," whether it be a personal trauma or a physical disability that they have to overcome. Some wheelchairs aremore visible than others.As an entrepreneur and CEO, I approached facing my wheelchair in a maverick fashion. It is an opportunity to be a personal brand, a face for the disease, and most importantly, the subsequent research. Like a national hero selling war bonds, my mission is to shed light on a topic that many feel uncomfortable to breach - I have made it my task to carry this message to the world throughlocal avenues and social media.As a result, I became a well-known community leader and recognized advocate. Often, "walkers" (those without a wheelchair) share a general interest and want to understand our rare-diseases. I used the leverage to successfully develop a recovery-group after being approached to lead it. Not because I'm "special" but because I am special! Through my efforts, I was voted Saline Countyperson of the year, bringing awareness to Limb-Girdle Muscular Dystrophy, and even raising MDA lock-up funds - all while proactively helping other hurting people with their "wheelchairs." Of course, I couldn't have accomplished this much without the love and support of my community andfamily.The implications of this experience might not change the world (unlikely?), but it changed our world. This will be a significant "win", a nice "hack", and serve as a road sign indicating that this path has exponential possibilities for our future.