Ellicottville Times
Page 2 (716) 699.4062
Hunter’s Hope to Host 15th Annual Family & Medical Symposium Jim & Jill Kelly welcome 60+ researchers and 40 Leukodystrophy families to WNY
This past Tuesday, July 24, 2012, the Ellicottville School Board met at 7:30 p.m. to discuss the many happenings at the school. Sherry Dunkleman was scheduled to present the 2012 Internal Audit Report, but that has been moved to the board’s next meeting. The board then presented the scores and percentages of grades 3-8 ELA and Math Assessments. Overall, the scores were very impressive, showing that the school’s teachers are doing an excellent job. Each grade level was ranked very highly against the other schools in Western New York. Next, Superintendent Mark Ward gave his report, which included information on the school calendar, “Dream It, Do It� and the principals’ recent training session. The school calendar will have a theme of a ticket to the future; the finished
product will be exciting to see, as will the many events planned for the upcoming school year. “Dream It, Do It� is a program Ward was introduced to by Kathleen Martel; it will give students insight into what and where they will be when they are prepared to start careers of their own. Internships could possibly be available, as well as programs similar to “New Visions,� a medical education program some students participated in last year. Technology teacher Chris Edwards has been trained in the program and it has the potential to be a great success. Last week, both elementary and middle/ high school principals, Connie Poulin and Robert Miller, spent five days in training to learn the new state requirements for teacher evaluations. There are seven requirements that a teacher has to meet, and evidence has to be provided that they
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Dawn Lombardi, left, will be showcasing her artwork at Julie Murphy’s business in Cattaraugus, Murphy’s Wine and Gourmet Shop on Saturday, August 4, from 10am to 4pm. Free wine sampling and gourmet food tastings will accompany the art show.
Allegany State Park Friday August 10 Beach Party Red House Beach Live Music, Jugglers, Face Painting & Crafts
Impressive Assessment Scores Highlight ECS School Board Meeting By Erin Bohn, Student Correspondent
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One of the Family activities scheduled during this Year’s Symposium our understanding of this extremely complex disorder,� said Jacque Waggoner, CEO of the Hunter’s Hope Foundation. “It is also vitally important to follow these children to ensure they have the opportunity for available treatments in the event they have a later onset of the disease.� Because of this, for the first time this year, Hunter’s Hope is also welcoming a number of families from across New York State who received a positive screen for Krabbe. For these families, the Foundation is hosting a special roundtable session aimed at learning more about the family’s experience regarding receiving a positive newborn screen in hopes of improving the quality of information available as well as
educating the families. Additionally, on Saturday morning all attending families will have the opportunity to honor their children at the Symposium Every Step Walk. Each year, families write messages on balloons that are released during a special ceremony. “I love the time of the balloons because it’s when you get to send a message,� says Jim Kelly, former Quarterback for the Buffalo Bills and Hunter Kelly’s dad. “I always put on mine that Hunter will always be my hero. He’s the little boy who changed my life, and definitely for the good.� A major portion of the annual program is funded by the WalMart State of Giving Grant, which has contributed over $300,000 toward the annual symposium program since 2008. Because of this grant, along with other support, including grants from the Buffalo Bills Youth Foundation, Hunter’s Hope is able to cover the vast majority of expenses for attending families, who often face financial hardship due to the cost of caring for their children. More information at www.huntershope.org.
OďŹƒce: 716-699-4800 ext 115 • Cell: 716-499-8839
Disease through the New York State newborn screening program. “Following children who receive a positive newborn screen for Krabbe but do not have the early infantile form of the disease can help increase
Friday July 27, 2012
Ownership is an Option!Andree McRae
Ellicottville, NY – The Hunter’s Hope Foundation will host the 15th Annual Family & Medical Symposium from July 30 through Aug. 5 at Holiday Valley Resort in Ellicottville, NY. Select researchers specializing in rare metabolic disorders, pediatric development, and newborn screening present the most current research findings and treatment options related to Krabbe and Leukodystrophies to families affected by these devastating diseases. “The annual Family & Medical Symposium is very much like a family reunion for us,� said Jill Kelly, co-founder of Hunter’s Hope Foundation and mom to Hunter Kelly, who suffered from Krabbe Leukodystrophy and passed away in August of 2005. The Hunter James Kelly Research Institute, which is located on the fourth floor of the New York State Center of Excellence in Bioinformatics and Life Sciences, is a partnership between Hunter’s Hope Foundation and the University at Buffalo. One primary focus of research at the institute is myelin repair, which is the protective covering of the nerves in the body that are damaged by Krabbe other Leukodystrophies, as well as in those who suffer from Multiple Sclerosis or stroke. Currently, a major part of this clinical initiative includes an ongoing study of children who receive a positive screen for Krabbe
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are being met. Teachers will have to become more involved with their students, the students’ families, the community, and they have to be selfaware and know how well they teach. Hopefully, this will help improve student and teacher performance. Over this summer, the school’s 10-year-old lawn mower caught fire. Thankfully, no one was hurt, but the school is now in need of a new mower. They plan to purchase a new Kubota mower at a cost of $13,500. This may seem like a high price, but they are going to receive over $8,000 from the insurance company, get a $500 rebate, and the mover also had replacement insurance. Next year there will also be a robotics team coached by Blair Wood and Chris Edwards; it was a success last year with both teams placing and, hopefully, there will be a repeat this year. Also, Joseph Shultz has
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