The story of Sam Bridgman, a student at the University of Portland living with Friedreich's Ataxia.
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Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.
The story of Sam Bridgman, a student at the University of Portland living with Friedreich's Ataxia.
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An Elon University junior studying the messages that adolescents living with perinatally acquired HIV receive from medical care providers is the recipient of the inaugural Thomas Barnett “Breaking Down Barriers” Scholarship.
Jamie Albright, a human service studies major and Lumen Prize recipient from Charlotte, N.C., received the honor April 26 at the Omicron Delta Kappa leadership honor society annual awards program in Whitley Auditorium, where she met with the parents of the award’s namesake.
Barnett died in June 2007 after a lengthy battle with Friedreich’s Ataxia, a rare genetic disorder. The Elon University Honors Fellow and Presidential Scholar had completed much of his studies toward a degree in digital art before his health forced him to withdraw during his senior year.
Read More: Junior receives award named in memory of advocate for disabled
At 5 years old, Izzy Penston couldn’t keep up with other kids. Her handwriting got more muddled with each day. Izzy had an MRI which showed a lipoma; a fatty tumor on the base of her spinal cord which was thought to be the root of these issues. She underwent a surgery a year later to have the tumor removed, but the problems still continued to persist.<?xml:namespace prefix = o />
At age 8, Izzy developed a heart murmur and visited a cardiologist. She was then tested for and later diagnosed her with a rare genetic disease called Friedreich’s Ataxia.
Friedreich’s Ataxia (FA) is a debilitating, life-shortening degenerative neuromuscular disease typically affecting children and young adults. Often, signs and symptoms include loss of coordination (ataxia) in the arms and legs, fatigue - energy deprivation and muscle loss, vision impairment, hearing loss, slurred speech, and life shortening heart complications – all while still completely aware.
Read More: Family fights disease through fundraising and Ride Ataxia
NORTH TEXAS (CBSDFW.COM) – Young Denton resident Emery Fitzhugh is a delightful, personality-packed 12-year-old, but it’s getting a little more difficult for her to show it.
Emery was diagnosed with Friedreich’s Ataxia (FA) when she was just eight.
The genetic, progressive, life-shortening, neuromuscular disease slowly robs a person’s balance, mobility, hearing and vision and eventually attacks the heart.
Thirty-year-old Kyle Bryant has battled FA since he was 17.
To help the sports enthusiast cope with his deteriorating physical changes, he turned to cycling.
The passion eventually led him on a ride across the country, some 800 miles longer than the Tour de France, and began a cross-country crusade to spread awareness of and raise funds for FA.
After living more than a decade with FA Kyle now spends most of his time in a wheelchair. He says he does it to conserve energy for cycling, which keeps his heart healthy and his body strong.
Read More: North Texas Bike-A-Thon For Neuromuscular Disease
DENTON Earlier this week, we introduced you to Natalie Newman, a 13-year-old girl with a rare disease.
She's hoping to beat the odds, and her dream is inspiring hundreds of other people many of whom hit the road Saturday in Denton.
The Ride for Ataxia is a rare race for a rare disease; only the second bike ride of its kind in Texas to raise money and offer education about Friedreich's ataxia, or FA.
It affects balance and coordination, explained Kyle Bryant. It is the reason I'm in a trike. I've been using a wheelchair full-time for about two years now, and my symptoms onset when I was 17 years old.
Bryant is beating the odds by living past the age of 30. Many with FA die in their 20s due to heart complications caused by the neuromuscular disorder.
Natalie Newman has also experienced severe side effects, but she is inspired by Kyle and the race. Hopefully I finish it this time, she said.