2016 Dancer’s Focus Remains on Pointe through Brain Surgery


Puyallup, WA- At the young age of 19, Brenna Cope faced the reality that a rare chronic diagnosis leading to brain surgery could steal her dream right out from under her. The Gov. John R. Rogers High School graduate, knew something did not feel quite right during her sophomore year in high school. By her freshman year at Cornish College of the Arts, the daily headaches, turned into painful “surges,” eventually momentarily robbing her of feeling in her right hand and right foot, impacting rehearsals, but never her drive.

Upon diagnosis of Chiari Malformation, this dancer destined for greatness says one thing never changed. “I can’t let go of it. I can’t let the statistics get in the way of what I was originally dreaming,” Cope says of her determination to become a professional dancer...
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 2014 Texomans Walk to Conquer Chiari


Burkburnett, TX- A walk bringing awareness to a disease that many have not even heard of, took place all over the country on Saturday and residents in Burkburnett participated. It's called the Conquer Chiari Walk Across America. "When we've gone to talk to them about it, we have to bring the information to teach them because they've never heard of it. And they don't know how to diagnose it, or treat it, or anything to do with it," Adrianne Fore, a local organizer, says...
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2014 Woman says her struggle with rare brain disorder will help her as a doctor


Houston, TX- Instead of starting her year at the University of Houston as she had planned, in August 2012 Martinez found herself in the office of neurosurgeon Dr. Dong Kim, professor and chairman of the Vivian L. Smith Department of Neurosurgery at UTHealth Medical School.
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2014 Conquer Chiari Walk... Co-Sponsored by West Newton Family


West Newton, PA- When Tracy Lowanse's twin son and daughter were only 6 months old, the West Newton mother sensed something was wrong with her babies when they were dragging the left side of their body as they crawled and her daughter had some difficulties with feeding...
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2014 Chiari Walk Hopes To Educate, Raise Funds


Charleston, WV- During her first week in the sixth grade, Keegan Shaffer, 11, was tasked to write about the most important event in her life. While her fellow students wrote about a sibling’s birth or starting middle school, Shaffer chose to describe the nine-hour brain surgery she underwent as a child...
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2014 Covington H.S. student prepares for Chiari Walk Across America: Musings by Marilou


Covington, LA- Sixteen-year-old Amanda Haley looks like any other high school junior. She is pretty and perky, flashes an incredible smile, and wears the latest fashions. However, Amanda, who cheers for Covington High School and blends in perfectly with her peers, is not just like everyone else...
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2014 Rome Couple Raising Awareness Of Disease Many Doctors Haven’t Heard About


Rome, NY- Nadine and Gene Horn of Rome are shining the light on a disease that many of us have never heard of and is “little known” in the medical community...
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2014 Steelworkers Sponsor Walk to Support Medical Research


Mount Pleasant, PA- Steelworker Jake Lowanse, a member of Local Union 10-00886, and his wife, Tracy, face special challenges in raising twin children who were born with a little-known neurological disorder called Chiari malformation....
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2014 Informative Radio Spot for Buffalo, NY Walk Site


Buffalo, NY- Segment recorded with Agnes Starr (organizer) and Chris Klein from 97 Rock.  Air date March 23, on stations: 97Rock, 103.3 The Edge, Classic Hits 104.1, SportsRadio 1270, The Fan 7:30, and 1120am...
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2013 Community Comes Together For 9-Year-Old With Rare Condition


Raleigh, NC- Emily Griffin, a good friend, said she was by Stephanie's side in the hospital. "I want people to find a cure for her," Griffin said. "She told me about her disease and I wanted to do something to help."...
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2013 Conquering Chiari One Step At a Time in Levittown


Levittown, PA- Christine and Donald Mulherin organize the walk in remembrance of their daughter Ashtyn Jeanne, who passed away in October 2010 from complications of chiari, Niki and Steven Ramirez of Levittown have four daughters who suffer from the disorder......
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2013 The CCWAA Successfully Completes Its Sixth Annual Fundraiser


Irvine, CA- We've grown each year in the number of walkers, and the amount raised. Most importantly, we have made people more aware that Chiari exists, and have connected people who have Chiari with others who are in the same boat.....
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2013 Playground Princess Returns - Surgery Relieved Rayne's Headaches


Tamaqua, PA- When at play, little Rayne Shellhamer might as well wear a crown. She is cute as can be and is adored by everyone - For the past few years, Rayne has been suffering from something not so typical - recurrent headaches.....
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2013 A Child’s Journey to Health and Happiness


Raleigh, NC- Jordan Dixon’s journey to health started with a mysterious condition that was dismissed by doctors as being something that she was just going to have to live with...
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2012 Bakersfield Teen Seeks Surgery for Brain Disorder


Bakersfield, CA- Jamie Tudor doesn't get out of the house very often. In fact, the 13-year-old girl tries not to move around much. "I read and do my homework, watch movies - not very many things," she said. "I have less friends, because I don't get out a lot..."
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2012 Comedy Show Raises Money for Chiari Malformation


Knoxville,TN- It's called "The Zipperheads of Comedy", a group of local comedians are coming together to raise money for a serious brain disorder...
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2012 Holmes Gives Treat to Family That Shares His Condition


Ponte Vedra Beach, FL- Brayden was diagnosed first. The 8-year-old has had six brain surgeries in the last three years, the cross-shaped incision from the most recent, performed two weeks ago, visible on the left side of his head...
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2012 Walk Across America for Chiari Malformation Awareness


Bakersfield, CA- It's very important to know that other people are going through this, too. My son has it. He thought he was the only one and I've had phone calls from people saying wow there's other people in town that know how I feel...
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2011 Lemoore Resident Back to Work 5 weeks After Brain Surgery


Lemoore, CA- Just a few months after Amy Valentino's 30th birthday and as a newly single mom, she underwent major brain surgery at Stanford University and despite the odds against her, lived to tell about it...
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2011 Lincoln Woman Raises Awareness for Rare Brain Disease


Lincoln, NE- A Lincoln woman who's daughter was killed by a rare brain disorder refuses to stand by and watch others get hurt. Chiari Malformation affects 300,000 people in the United States, but there is very little awareness of the disease. Jill Nelson is hoping to change that.......
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2011 Teen Struggles With Neurological Disorder, Advocates Awareness


Corona, CA- Carter Berte, 13, has a rare neurological disorder called Chiari malformation, which involves pressure on his spinal column and chronic pain. Although he looks healthy, his mother says that it is a struggle for the eighth-grader to get through each day...
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2011 Fundraising Event for Little-Known Disorder to be Held Saturday


Tonawanda, NY- It’s not a very long walk — only a mile — that’s being held to raise research funds for Arnold chiari, a neurological disorder that effects more than 300,000 in the country. It’s not long because many individuals with the disorder simply don’t have it in them to do much more activity than that...
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2011 High Winds Don’t Diminish High Spirits During CCWAA


Long Branch, NJ- A windy, yet warm sunny day greeted walkers taking part in the Conquer Chiari Walk Across America held at noon Sept. 17 on the Great Lawn, McKinley Street, Long Branch......
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2011 Women's Soccer Helps Coach in Fight to 'Conquer Chiari'


Little Rock, AR- On Friday, Sept. 16, the Central Arkansas women's soccer team let a 1-0 lead slip away in the second half against in-state rival UALR and suffered a 2-1 loss. About 10 hours later, at just after 7:00 the next morning, the Bears were up and set to endure a 5K on a cold and rainy Saturday morning.....
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2011 Jackson Boy Suffers From Rare Neurological Disorder


Jackson, MI- When Amy Hess’ son Matheson kept experiencing severe headaches and muscle weakness, she and her husband, Brad, knew something was wrong. After an MRI exam, a doctor confirmed their worries and told the Jackson couple to get their 2-year-old son to a neurosurgeon right away.....
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2010 UL youth overcomes big hurdles


Flushing, OH- Kaden Koscoe is your normal 7-year old. He loves hanging out with his friends, playing baseball and he's not looking forward to going back to school. However, there's so much more to the Union Local second grader that you'd never know....
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2010 Walk in Westbrook to Raise Money For Brain Disorder


Westbrook, CT- The town is one of 28 communities nationwide participating in a fundraiser for a rare brain disorder. RoseAnn Prevost, a resident who is afflicted with Chiari malformation, is organizing the Connecticut event for Walk Across America. The event, which is taking place for the second time in Connecticut, will be held at 2 p.m. Saturday at Westbrook High School...
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2009 Walk Aims at Teaching Others About Little-Known Disorder


Kalamazoo, MI- Lisa Friend suffered from severe headaches her whole life. They especially flared up when she sneezed, coughed or laughed, but she didn't seek help until a co-worker told a joke and Friend passed out from laughing...
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2008 Chiari Walk Hits Close to Home for Resident


Lithia, FL- Affecting over 300,000 people nationwide, Chiari malformation is one disorder that is gaining interest which is why Dover resident Vonda Maxwell has decided to take the word to the streets, hosting the Conquer Chiari Walk Across America in Lithia...
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2008 Wrentham Woman Hopes to 'Conquer Chiari'


Wrentham, MA- Casey Gray, 21, is busy with school, work, and doctor appointments, but has managed somehow to organize a walk Saturday to raise money and awareness for a neurological affliction that is relatively obscure, but which she and many others suffer from, nonetheless...
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2008 Two local women spearheading effort to start a Chiari walk...


Evansville, IN- Just a few years ago, Tharilyn "TJ" Bunker was living in Southern California. A single mother, she was raising two sons on her own. She was working as a theatrical lighting designer, a challenging, demanding job that she loved. She enjoyed the outdoors, especially surfing and rock climbing...
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