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FARA Ambassador Program

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

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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.

Matt Lafleur

MattLafleurName: Matthew Lafleur

Age: 31

Where do you call home? Opelousas, Louisiana

Education (degree[s]): BA in English, MA in general mental health counseling

What's a typical day for you? I live next-door to my family’s company where I work with family nearby, so I live on my own and am able to go to work next door on weekdays. Most days, I write for the blog I contribute to about being a (bad) Catholic dealing with FA. The blog is called Sick Pilgrim. Less often, I like to volunteer as a counselor in my area.

How long have you known you are living with FA? About 20 years.

Are there any others with FA in your family? My younger sister also has FA. She is 29. She and her husband have two incredible kids, and they live next door.

Describe your transition from walking to walker/wheelchair. My symptoms became apparent when I was in junior high/high school, so at a time when I most wanted to just fit in with everyone else, my clumsy walk and poor coordination made me stick out. I refused to accept the help from a wheelchair in high school, mostly because I was hardheaded. In college, I realized that there were no walls I could hold onto for support when I had to cross campus to get to class, so I finally agreed to use a wheelchair. And what really surprised me was that being in a wheelchair, instead of imprisoning me, gave me a small and newfound sense of freedom - no longer was I the one everyone had to wait for; no longer was I consistently putting all my strength into remaining upright. I would have scoffed at this idea, but found it to be absolutely true - that sometimes accepting help can make us more independent, not less. 

Nygel Lenz

NygelLenz1My name is Nygel Lenz, and I am 41. I live in Florida with my beautiful and amazing wife, our lovable pug, and our crazy fish. In short, I began having Friedreich’s Ataxia (FA) symptoms at 11; was certain that my balance was a problem at 15; and finally diagnosed at 19.

Growing up, I was a fairly typical, active boy. I played sports like football, soccer, basketball and baseball. I also loved my bike and skateboard, especially building crazy ramps and jumping them or doing tricks. Basically, I was outside doing some sort of activity whenever I had an opportunity.

My first FA symptom was scoliosis at age 11. I had spinal fusion to help straighten my back at age 15. As soon as I got up and started walking again, I realized that my balance was different. (In hindsight, there were other signs that I had ataxia, but it was obvious after that surgery.) Walking straight, having my feet always go where my brain directed them became an issue. It scared me!

I began seeing a neurologist after the surgery—at the beginning of my sophomore year in high school. I went all the way through high school undiagnosed. 

Jordan Howell

JordanHowell 2Name: Jordan Howell

Age:  37

Where do you call home? I live in Houston, Texas, but I grew up in Dallas, Texas.

Education (degree(s): I graduated from the University of North Texas in 2002. I majored in advertising and film production. I worked as the film critic for the school newspaper for 2 years. 

What is your relationship status? I am single with no children. I have not, as of yet, found the one. Maybe I'm just too ugly!

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed in 1994. I was 15, and it came as a complete shock. My sister had recently died of Leukemia, and I was sent to a neurologist for, what I thought was, a back related injury from BMX bike racing. I did not know very much about Friedreich's Ataxia or understand the severity of the word, "progression." In hindsight, I can see a lot of the balance issues that led to my diagnosis.

Describe your transition from walking to a wheelchair? I had minor balance issues throughout High School. I was mistaken for being drunk or on drugs many times. It became more dangerous during college. Falling down stairs or injuries from being stubborn, finally, made me seek out mobility aides. Over the course of a year, I went through AFO'S, canes, and walkers. I'm bought my first wheelchair soon after my 21st birthday. 

Caroline Spencer

CarolineSpencerMy name is Caroline Spencer. I am 28 years old, and I live in Cincinnati, OH, with my mom and our three dogs--two small dogs and my Great Dane service dog, Clark.

I hold a Bachelor’s degree in neuroscience from the University of Cincinnati and a Master’s degree in speech pathology from Purdue University. It was during grad school that I was diagnosed with Friedreich’s ataxia. Like many people with FA, this diagnosis was finally a definitive answer that put all the puzzle pieces together after many years. For example, it took me a long time to learn how to ride a bike, and I had never been very athletic. I am the only one in my family, however, to have FA, so it was not something we expected. 

Professionally, the news really hit home, as my friends, teachers, and I actually were familiar with FA, or at least the speech difficulties that accompany it, from an academic point of view. Having FA has brought many challenges, but also given me the perspective of being a patient. I currently work in research, and having the experiences on both the “patient side” and “professional side” has been a benefit in many ways, and gives me an understanding that other professionals don’t have. This fall, I will start doctoral work in the field of Communication Sciences and Disorders at the University of Cincinnati. I hope to be able to use my experiences to contribute to our understanding of speech and communication, especially in the context of degenerative diseases. 

Frankie Perazzola

FrankiePerazzolaName: Frankie Perazzola

Age: 24

Where do you call home? A beautiful little town, San Pedro, California.

Education: B.A. in Communication from Arizona State University.

What's a typical day for you? Everyday is different but, I always start my day with stretching/meditation and a nice a cup of coffee. I make it a point to workout everyday and keep my mind right. I am in the process of starting my own consulting business ,so I have definitely been busy with paperwork and building my brand.

How long have you known you are living with FA? It has been a little over two years! I was officially diagnosed in June of 2015 at the age of 22.

Are there any others with FA in your family? Nope! I like to think of myself as being the lucky one in the family (:

Describe your transition from walking to walker/wheelchair? I am still mobile as of now with the help of a cane , walker or wheelchair depending on the event or activity. Its been quite the experience learning how to adapt but I am starting to get the hang of things...I think. 

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