FARA Ambassador ProgramDiversity Among Wheelchair Users
Society's Profound Need to Recognize Diversity Among Wheelchair Users
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.
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 
The Friedreich’s Ataxia community has so many wonderful people working so hard towards a singular goal: treatment and a cure for FA. I always feel so blessed and thankful to attend FARA events, it’s so encouraging to be striving for a different future alongside fantastic people as dedicated as the Lamascus and Cardenas families. The Annual Century 21 King Golf Classic, held in Fontana, California on September 19th, is the result of the dedication and faithful friendship between two families.
I was running track my freshman year of high school and developed some pain in my left knee. The orthopedic physician diagnosed me as having tendonitis. He told me to rest for a week and ice it frequently. He noticed that I had some slight scoliosis and that my walking gait was a little “off”. He referred me to Scottish Rite Hospital in Dallas, TX where they ran numerous tests, including a genetic blood test. I turned 15 years old and a few weeks later, my mother received a call from the neurologist. We set up an appointment as a family to learn what the results meant.
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