2016 Great Steps Walk for NF

Family and friends of Lindsey Allee, center in front row, pose for a picture during the 2016 Great Steps Walk for Neurofibromatosis (NF) event held June 4 in Kansas City to help raise funds for medical research. Lindsey is diagnosed with NF which requires numerous surgeries each year. The Lindsey’s Lucky Stars team is front: McKenna Minor, Lucas Minor; back: Chris Allee, Jackie Minor, LaRue Allee, Lou Ann Ewart, Lindsey Allee, Bill Casey, Marita Casey and Jean Ann Casey.

Since she was a baby, Lindsey Allee has fought Neurofibromatosis (NF), a genetic disorder that causes tumors to form on nerve tissue including the brain, spinal cord, and nerves. She faces many surgeries every year, which sometimes render her bedridden while she recovers, and has developed scoliosis because of NF. With the support of her family and friends, Allee is able to have a normal childhood, never letting NF get the best of her personality.

Since she has been in school, Lindsey’s condition has become known to teachers and building administrators, only growing the support for Allee including fundraising events that go to research toward a cure for NF.

Most recently, faculty from each building at Maryville R-II participated in Jeans for Gene Research. Staff members paid $10 to wear jeans for a week in May. The event raised $745 for Allee’s team, Lindsey’s Lucky Stars.

Their team was one of several that participated in the June 4 Great Steps Walk for NF event in Kansas City that raised over $22,000 toward NF research. This was the team’s fifth year taking part in the walk.

At the end of the month Allee will have another major surgery, including a spinal fuse that will result in a two to three month recovery.

While events such as Great Steps help to raise money for research, the NF Network is in danger of losing research funding due to a Senate Bill 2943 titled National Defense Authorization Act for Fiscal Year 2017. The bill includes funding for research on NF and cancer, among a number of other conditions. If passed, SB 2943 could end the department of defense’s NF research program.

The Durbin Amendment is being brought before the Senate to nullify the sections restricting funds to the medical research. Allee’s parents, Chris and LaRue Allee, Maryville, hope the NF Network can continue to receive funding so that their daughter may someday have the necessary treatments to overcome NF once and for all.

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