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Raising Funds and Awareness of Ataxia

Excerpt of an Article by Susan C. Schena | Dixon Patch

2015-0530 rideATAXIA

On May 30, 2015, families, cyclists, and food enthusiasts will gather for the 6th Annual rideATAXIA NorCal, a single day, multi-route cycling fundraiser presented by Outback Steakhouse to benefit the Friedreich’s Ataxia Research Alliance (FARA), a non-profit dedicated to research leading to treatments and a cure for Friedreich’s ataxia (FA).

Celebrating its 6th year, rideATAXIA NorCal kicks off at Davis Veterans Memorial Center on May 30, and offers 6, 19, 40, and 60 mile cycling routes on scenic country roads and a delicious post-ride lunch prepared by Outback Steakhouse.

Founded by Sacramento native Kyle Bryant, rideATAXIA provides hope and a way to take action in the face this debilitating disease for many local young adults living with FA.

Kyle Bryant, 33, carefully holds the straps on his bike helmet in each hand as he concentrates to align the buckle before snapping it in place. This simple act requires his full attention because at age 17, Kyle was told by doctors that he would lose his abilities over time, would soon be in a wheelchair, would lose the ability to take care of himself, and would likely die a premature death due to heart failure. Kyle was diagnosed with Friedreich’s ataxia (FA), a degenerative neuro-muscular disorder with no treatment or cure.

FA causes a progressive loss of coordination and muscle strength and can also include life-threatening heart conditions, diabetes, and severe scoliosis. Symptoms usually start between the ages of 5 and 18, and most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.

Growing up in Northern California, Kyle excelled at many sports but slowly lost the ability to participate as FA progressed and affected his mobility. Although scared for his future, Kyle was determined to move forward and went on to graduate from the University of California at Davis in 2005 with a degree in civil engineering. It was at UCD where he first met a researcher who was investigating FA—someone who understood the devastating disease and was working on a way to treat it. “It was the first time I was filled with hope,” said Bryant.

At that point, it was unsafe for Kyle to ride a bicycle. Filled with optimism, he decided to put a stop to the loss of the activity he cherished. Kyle took back control, purchased a recumbent trike, and resumed his riding with passion. In 2007, Bryant and his family decided to raise much needed awareness and funds for FA research by cycling 2,500 miles from San Diego to Memphis—and so rideATAXIA was born.

Since then, Kyle has grown rideATAXIA into a marquee fundraising program of FARA, creating a nationwide series of multi-route cycling events presented by Outback Steakhouse to benefit FARA in Dallas, Northern California, Chicago, Philadelphia, and Orlando. In 2014, rideATAXIA welcomed over 2,300 participants and raised over $800,000 to advance FA research, bringing total fundraising to $3 million since its inception.

To read the complete article by Schena, click here.

If you missed the event in Northern California this year, there are many other locations where the event is held, and there are other ways to contribute to this worthy cause.

Credits

Thanks to Kyle Bryant and rideATAXIA for raising funds and increasing awareness of Ataxia; Outback Steakhouse for providing a post-ride meal; Barefoot Wine and all the other sponsors; Susan C. Schena for writing the article; Dixon Patch for committing its resources to the article; YouTube for hosting the video; Google for helping me find the article; and all the other people who, directly or indirectly made it possible for me to include the picture, video, and text in this post.

Scott
Even after brain surgeries, chemotherapy, and radiation treatments to eradicate his brain cancer, Scott continued to work; continued to study; and earned professional certifications from the Project Management Institute, American Society of Quality, and Stanford University School of Professional Development. How were all of these achievements possible at a time when Scott was struggling with the hurdles of brain injury? The answers are in this blog.

3 Responses to “Raising Funds and Awareness of Ataxia”

  • Esther says:

    Sarah Mcarthur wrote the following poem about her ataxia experience.

    I reach for something and I’ll shake
    How can something so simple be so hard
    This happens all the time,
    it makes my heart ache
    In front of people, I’m so ashamed, I’m on guard
    My legs don’t know how to walk
    Just move one foot in front of the other
    If I try to walk in front of people,
    they would gawk

    So I don’t walk, they’ll laugh, at one thing or another
    I have a strange way of talking
    It’s hard to get the words out
    My voice sounds like I’m squawking

    It’s getting harder, there’s no doubt
    I have no balance, I tilt from side to side
    I have fallen so many times, I can’t count
    I have bruised more than just my pride

    These are my experiences, this is my account
    This is a horrible life, this life I have been given
    A life so full of broken promises and rid of hope
    It makes you forget how to be forward and driven
    The appearances of new disabilities makes it hard to cope

    • Scott says:

      Esther, I believe writing poetry and documenting you journey can be very therapeutic. Furthermore, they are great ways to explain to others how you feel and think when spoken words don’t seem to work.

  • Esther says:

    I am now more aware –ThankYou
    Ataxia is not a single disorder but a clinical description of abnormalities in coordination. There are many different types of ataxia some causes are genetic and many more are “sporadic or acquired.
    Ataxia can affect movement, speech, eye movement and swallowing.
    Many conditions can cause ataxia, including alcohol abuse, stroke, tumor, cerebral palsy and multiple sclerosis—Mayo clinic website.


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**** About The Author ****

During the past 13 years, I have been diagnosed with cancer, brain injury, balance issues, stroke, ataxia, visual impairment, and auditory challenges. I have overcome significant adversity! I can explain how to overcome your challenges. I am a very active Toastmaster and a motivational speaker.