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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

Lealan LaRoche Sims

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.

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Diversity 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!"

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Jamie Plourde

Jamie with best friend & fellow Ambassador, Tom 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.

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We Care About Rare

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.

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6th Annual Century 21 King Golf Classic

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.

When Josh Lamascus was diagnosed with Friedreich’s Ataxia his dad, Brian, asked his good friend, Julio Cardenas, if Julio’s annual golf classic could be dedicated to raising funds for the Friedreich’s Ataxia Research Alliance. The answer was and continues to be a very supportive YES! When I say that this tournament is rooted in faithful friendship, I am not exaggerating one bit, the bond between these families is strong and clear to all that attend the event. In the face of something as devastating as a diagnosis of FA, faith and friendship can move mountains. I am so thankful to be pushing towards the same finish line as the people behind this event, I have no doubt we will reach the triumphant end!

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