WARREN, NJ – Students and teachers are inviting the general public to join them in reading one of the summer reading assignments for rising seniors at Watchung Hills Regional High School, “Tales from the Bed: A Memoir,” by the late Jenifer Estess, as told to her sister, Valerie Estess.
Tales from the bed is about the author’s battle with A.L.S. (amyotrophic lateral sclerosis).
In addition to increasing the students’ awareness about A.L.S., the initiative will try to engage the community at large in reading the book, Then the community will be invited to join with student, parent and community groups during the 2015-2016 School Year at community fundraising events and at a community “book group night,” according to Watchung Hills English teacher Laura Goodson said. The date for the book night is still to be determined.
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The student government at Watchung Hills, including both the All-Student Council (ASC) and the Grade-Level Councils (GLC), plan to make support of Project A.L.S., and A.L.S research in general, the focus of their fundraising efforts during the 2015-2016 School Year. Watchung Hills students are hoping to hold a year-long series of events to support research efforts and to raise awareness, among students and among the broader community. Student government advisor Maureen Kelly is joining Goodson in coordinating this initiative.
The late author, Jenifer Estess, succumbed to A.L.S., known more broadly as Lou Gehrig’s Disease, in 2003. The memoir was first published in 2005.
After reading “Tales from the Bed” over the summer, a multi-discipline unit during the Fall 2015 semester involving the English, and other academic departments, will discuss the memoir. Students will learn about A.L.S. in general. They will explore various efforts that have been made to find successful treatments and a cure for A.L.S. One of the leading groups advocating vigorously for more and innovative research about A.L.S is Project A.L.S. Project A.L.S. was started by the Estess family after Jenifer, a 35-year-old New York theatre and film producer, was diagnosed in 1998 with A.L.S.
Goodson brings a special interest to the project. Like the Estess sisters, Goodson had a sibling who succumbed to A.L.S. three years ago
Principal George Alexis and Superintendent Elizabeth Jewett, as well as Goodson and Kelly, welcomed to the school on Wednesday, May 20, Valerie Estess, her sister, Meredith Estess, and Erin Fleming, associate director of Project A.L.S. They discussed strategies going forward to implement the A.L.S. initiative for students and the accompanying awareness-raising events.
“We thank Laura Goodson and the administrators and teachers of Watchung Hills for welcoming Project A.L.S. and giving us a chance to partner on this extraordinary effort to educate and raise awareness about A.L.S. and related brain diseases in the community,” said Valerie Estess. “We are excited and energized to partner with the young superstars at Watchung Hills.”
“A.L.S. is a brain disease closely related to Parkinson’s, Alzheimer’s, and Huntington’s disease,” according to the Project A.L.S. Web site, www.projectals.org.
The Web site continues: “Also known as Lou Gehrig’s disease, A.L.S. targets cells called motor neurons, which reside in the brain and spinal cord. Motor Neurons are responsible for sending messages from the brain to muscles throughout the body.
“In A.L.S., as motor neurons die, a person progressively loses the ability to walk, speak, swallow, and breathe. A.L.S. is usually fatal within 2 to 5 years of diagnosis, but Project A.L.S and others are working together to develop the first effective treatments. Our current strategy is to slow the progression of A.L.S until we can cure it.”
According to the Project A.L.S. Web site, Jenifer Estess was, “Told at the time of diagnosis to ‘max out her credit cards and eat junk food.’” Instead, she “committed her efforts to making a difference for people with A.L.S. – and producing treatments and a cure.”
From the beginning, project A.L.S. sought to change the dynamic of research.
“Project A.L.S changed that approach dramatically by requiring that researchers and doctors from many disciplines work together, share data openly, and meet shared research milestones,” according to the Project A.L.S. Web site.