Community members rally around Parrish family of New Philadelphia
Katie Butke, executive director of the Eastern Ohio District of the Muscular Dystrophy Association, was at New Philadelphia High School on Sunday, April 10, for the MDA/SAM Parrish Family Walk-a-thon to support research for Friedreich’s ataxia, a genetic disease shared by Lindsey and Emily Parrish.
“The Parrish walk is an annual event, and this is our eighth year. Friedreich’s ataxia is one of the 43 diseases that we help cover, but the money raised today is going specifically back to research for Friedreich’s ataxia,” noted Butke. “The Parrish family has raised a total of over $200,000 for this research over the years, so we are hoping to raise another $20,000 today. We are anticipating about 150 walkers coming in for this.”
“Lindsey is 20, is a sophomore at Malone College in Canton, and was diagnosed in 2003, and that’s what started us with this. Emily is a New Philadelphia High School senior, and she was diagnosed in 2008. Kendra is 16, and is here also, but she does not have Friedreich’s ataxia,” explained Sandy Parrish, the matriarch of the family, as she welcomed participants to the walk event. “To support the research, we also have done yard sales throughout the year, a cookbook sale, and other things. Yesterday, we also did a benefit with Auntie Anne’s pretzels at New Towne Mall. We made $1,800, and that also goes toward the walk.”
The disease strikes one in every 22,000 to 29,000 people, and is caused by a genetic disorder. “Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions,” according to online source PubMed Health, which also states, “Friedreich’s ataxia is caused by a defect in a gene called Frataxin (FXN), which is located on chromosome 9. Changes in this gene cause the body to produce too much of part of DNA called trinucleotide repeat (GAA). Normally, the body contains about 8 to 30 copies of GAA. Those individuals with Friedreich’s ataxia have as many as 1,000 copies.”
Lindsay Parrish, who found out she had the disease at age 13, admitted that Friedreich’s ataxia has made her life different than originally planned.
“I’m not as independent as I would like to be, but otherwise I can do everything else normally, as any other 20 year old would do. A lot of the doors at school are not accessible, so I have to have someone walk with me to open them. Last semester, I had an internship, and I had to have a partner go with me. But I am pretty positive spirited,” she said. “It is so great to see how many friends are here to support me, including my friends from Malone.”
“I have a lot of years here, and also my boyfriend from Kent main campus and his friends are here,” said Emily Parrish, who will be attending the campus next year. “There is not much adaptation to (the disease) right now. In the future, I expect there will be,” she stated. “The money today will help with research to hopefully find a cure.”
Kendra Parrish also wore a purple walk-a-thon shirt in support of her sisters. “We are pretty normal. We fight sometimes, but we also get along,” she admitted.
Numerous teams carried banners to announce their support for the walk, and wore purple T-shirts that had Seeking a Miracle emblazoned across the front. Supporters included the Parrish family’s relatives, New Philadelphia High School seniors, student council, staff members, and band members, Malone and Kent State college students, as well as neighbors and friends. Also participating were team members from the New Philadelphia Fire Department, where Jim Parrish, the girls’ father, serves as fire chief.
“We thank the Parrish family for their continued support,” said Butke. “No one wants to find a cure more than a family member, but we are right here next to them, to support them in whatever way we can.”
“The Parrish walk is an annual event, and this is our eighth year. Friedreich’s ataxia is one of the 43 diseases that we help cover, but the money raised today is going specifically back to research for Friedreich’s ataxia,” noted Butke. “The Parrish family has raised a total of over $200,000 for this research over the years, so we are hoping to raise another $20,000 today. We are anticipating about 150 walkers coming in for this.”
“Lindsey is 20, is a sophomore at Malone College in Canton, and was diagnosed in 2003, and that’s what started us with this. Emily is a New Philadelphia High School senior, and she was diagnosed in 2008. Kendra is 16, and is here also, but she does not have Friedreich’s ataxia,” explained Sandy Parrish, the matriarch of the family, as she welcomed participants to the walk event. “To support the research, we also have done yard sales throughout the year, a cookbook sale, and other things. Yesterday, we also did a benefit with Auntie Anne’s pretzels at New Towne Mall. We made $1,800, and that also goes toward the walk.”
The disease strikes one in every 22,000 to 29,000 people, and is caused by a genetic disorder. “Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions,” according to online source PubMed Health, which also states, “Friedreich’s ataxia is caused by a defect in a gene called Frataxin (FXN), which is located on chromosome 9. Changes in this gene cause the body to produce too much of part of DNA called trinucleotide repeat (GAA). Normally, the body contains about 8 to 30 copies of GAA. Those individuals with Friedreich’s ataxia have as many as 1,000 copies.”
Lindsay Parrish, who found out she had the disease at age 13, admitted that Friedreich’s ataxia has made her life different than originally planned.
“I’m not as independent as I would like to be, but otherwise I can do everything else normally, as any other 20 year old would do. A lot of the doors at school are not accessible, so I have to have someone walk with me to open them. Last semester, I had an internship, and I had to have a partner go with me. But I am pretty positive spirited,” she said. “It is so great to see how many friends are here to support me, including my friends from Malone.”
“I have a lot of years here, and also my boyfriend from Kent main campus and his friends are here,” said Emily Parrish, who will be attending the campus next year. “There is not much adaptation to (the disease) right now. In the future, I expect there will be,” she stated. “The money today will help with research to hopefully find a cure.”
Kendra Parrish also wore a purple walk-a-thon shirt in support of her sisters. “We are pretty normal. We fight sometimes, but we also get along,” she admitted.
Numerous teams carried banners to announce their support for the walk, and wore purple T-shirts that had Seeking a Miracle emblazoned across the front. Supporters included the Parrish family’s relatives, New Philadelphia High School seniors, student council, staff members, and band members, Malone and Kent State college students, as well as neighbors and friends. Also participating were team members from the New Philadelphia Fire Department, where Jim Parrish, the girls’ father, serves as fire chief.
“We thank the Parrish family for their continued support,” said Butke. “No one wants to find a cure more than a family member, but we are right here next to them, to support them in whatever way we can.”
Published: April 12, 2011
