Young Woman With Rare Disease Cycles through Denton

20-year old Emily Penn has Friedreich's Ataxia

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    NEWSLETTERS

    A North Texan is working to bring attention to a rare neuromuscular disease with a bike ride on March 23. (Published Saturday, Mar 9, 2013)

    As a 20-year-old, Murphy resident Emily Penn is coming to terms with a harsh reality... she's losing the ability to walk.

    Penn has Friedreich's Ataxia also known as F.A.  According to the National Institutes of Health, the disease affects one in 50,000 Americans. In the short term, a person with F.A. has difficulty walking. In the long term, a person can develop diabetes, heart disease and a shorter life expectancy. There are currently no treatments.
    During the past three years, Penn has volunteered and has helped raise money for Ride Ataxia Dallas, a cycling event designed to raise awareness regarding the disease. But this year will be different.
    "I would have never in my wildest dreams think I would be bicycling," Penn said. 
    With intense coaching, Penn is training to cycle through 25 miles of Denton streets for Ride Ataxia Dallas.
    "The beautiful thing of working with somebody like this is you can give them a sense of success on an hourly basis, [and] the results go for weeks and months out," Richard Wharton, one of Penn’s coaches said.
    The generosity of the Richardson Bike Mart and the Texas Irish, local cycling groups donated the recumbent tricycle that Penn will use in the race.
    "It’s opened so many doors for me," Penn said. “It's such an incredible experience."
    Her parents, Richard and Alexis have supported her during this challenge.
    "She set her mind to her. I didn't make her do it; her mother didn't make her do it. She wanted to do it on her own," her father said.
    What is Penn’s message of inspiration?
    "You have put yourself in the mindset of ‘you can do it’ and you will," Penn said.
    The 2013 Ride Ataxia Dallas is scheduled for March 23. Click on this sentence to learn how to cheer for Penn