Lealan, In My Words By Katie Weir I have long looked up to Lealan’s athletic prowess. On a fall afternoon in the sixth grade, our PE class convened for the annual mile run. Lealan had a reputation for being one of the fastest runners in school and that day she did not disappoint. Lealan left me, and most of the other girls (and boys), in the dust. As we moved in to junior high, Lealan was the best at softball; with her speed she could turn a single into a standup double. I was lucky enough to have her as a tennis partner during those years. On the court she was swift, confident and graceful.

In the past few years, since the combination of getting a degree in public health and dealing with my middle sister's and my FA becoming more and more progressed, I have been feeling an urgent need to recognize that simply using a wheelchair does not mean all wheelchair users are, in any way, equal. Here are my thoughts...

"Just as it is illogical to consider all mammals the same because they are warm-blooded, there is no logic in saying all people who use wheelchairs are alike merely because they must rely on wheels for mobility." I wrote this sentence for my thesis project, but thought it was very apropos here. Thus, to me, a wheelchair user for over twenty years, there is an aching need to recognize the diversity among wheelchair users. Although we all use the same type of wheeled assistive device for mobility, individual wheelchair users often possess diverse abilities and have highly unique, specialized physical needs, in addition to individual personality traits and cognitive and emotional responses. In other words, people who use wheelchairs are neither the same individual, nor are they necessarily paralyzed or impaired from only from the waist down; speech, manual, vision, hearing, skin sensations (i.e. tingling, buzzing, burning, or numbness), fatigue level, ability to sleep, and many other complicated physiological processes may be affected.  Robbi and her sisters, Becca (left) and Katie (center). Of course, these physical symptoms vary considerably by disease or condition and they may vary still further from one person to another. The overwhelming majority of people I meet tend to assume that because I look "normal," but use a wheelchair, I must have the typical symptoms of a person with paraplegia: full motor control, no hearing impairment, no difficulty articulating, and no fatigue. I want to scream out sometimes, "NO! I am NOT paraplegic!"

Jamie with best friend & fellow Ambassador, Tom. Hi my name is Jamie Plourde and I live in Pembroke NH. I am 24 years old and I have a beautiful baby girl named Lily, who is now 1 year old. I was diagnosed with Friedreich's Ataxia when I was 8 years old. When I was 13, I had a spinal fusion surgery and I have been in a wheelchair ever since. Unfortunately, the hardware in my spine broke sending me back to the hospital three months later for a corrective procedure. I was really thankful when that mess was all done! Jamie with best friend & fellow Ambassador, Tom.

On September 20th and 21st, I had the honor of attending the Global Genes Patient Advocacy Summit and the Tribute to Champions of Hope gala in Newport Beach, California. Global Genes is an organization passionately dedicated to advocating, unifying and bringing much needed awareness to the rare disease community. After a close friend had a child born with a rare disease, Nicole Boice was introduced to life with a rare disease and learned first hand that rare diseases, although rare, are collectively larger than the combination of both the AIDS and cancer communities. Although rare disease as a whole affects such a large amount of people, only a very small percentage of these diseases have an organization to advocate for them and support research. Something desperately needed to be done. In 2009, Nicole Boice founded the Global Genes project with the mission to give patients/parents/families of rare disease the tools & opportunities to become advocates, network with others and bring the rare community together in support of each other, research and education. Please visit www.globalgenes.org to learn more about this wonderful organization. To hear president Nicole Boice share about her inspiration and hope for Global Genes and all rare diseases, please click here.