WARREN, NJ - Members of the general public are attend a Community Book Discussion at 7 p.m., Wednesday, Oct. 21, at Watchung Hills Regional High School of the memoir, “Tales From the Bed, On Living, Dying and Having It All,” by the late Jenifer Estess, as told to her sister, Valerie Estess.
Valerie Estess, and her sister, Meredith Estess, along representatives from Project A.L.S., the non-profit advocacy group the Estess family founded to support research to fight A.L.S., (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, will be guests at the Community Book Discussion. They will talk about Jenifer Estess’ battle with A.L.S., and will answer questions, provide more details, autograph books, and engage the audience in ways they can help support more innovative and collaborative research about fighting A.L.S.
Tales From the Bed was one of the assigned summer reading selections last summer for all students at Watchung Hills. Valerie Estess spoke at student assembles for each grade level at Watchung Hills on Wednesday, Oct. 14.
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On Oct. 14, Valerie Estess spoke about the overall journey the Estess family has taken since their sister, Jenifer, was diagnosed in 1998. Jenifer Estess succumbed to A.L.S. in 2003. The memoir was first published in 2005.
Watchung Hills teachers are expected to use discussions, tangential references and class lessons to enable students to learn about A.L.S. Students may explore various efforts that have been made to find treatments and a cure for A.L.S., as well as efforts by various groups to advocate for more research about A.L.S., and for better care opportunities for A.L.S. patients and their families.
One of the leading groups advocating for more innovative and collaborative research about A.L.S. is Project A.L.S. It was started by the Estess family after Jenifer Estess, a New York theater and film producer, was diagnosed. Jenifer was 35 when she was diagnosed. Project A.L.S. has already raised millions, and has worked closely with leading university-based research scientists to not just find treatments for A.L.S., but to also actively collaborate in their research to bring about more breakthroughs. Valerie Estess said one thing Project A.L.S. leaders found when they embarked on supporting research was a remarkable lack of research collaboration. This is a shortcoming they have work hard to correct for the better, Estess said.
Year-Long Watchung Hills Effort
Last May, the Estess sisters and leaders of Project A.L.S. met with Watchung Hills teachers and administrators to discuss adding Tales From the Bed to the summer reading assignments, and conducting follow up programs this school year to raise funds and awareness for A.L.S. advocacy.
They also met with English Teacher Laura Goodson, whose brother died from A.L.S. three years ago, and Special Services Teacher Maureen Kelly, faculty advisor to Watchung Hills student government. The student government plans to organize fundraising and awareness-raising programs this year for students and for the community.
At the student assemblies on Oct. 14, Goodson opened the speaking program by sharing the experience in her family. Her brother, Tom Shea, who was diagnosed with A.L.S. in 1998, and died in 2012. She said her brother had had a strong will to live, and fought to defeat A.L.S. from the moment he was diagnosed. It was he who researched the efforts of Project A.L.S., liked what the organization was doing, supported the fact that it was encouraging collaborative research, and spent very little money in overhead. That interest by her brother led Goodson to contact Project A.L.S. From the moment she did, Goodson said, the Estess sisters and Project A.L.S. were welcoming and encouraging of all the efforts at Watchung Hills.
Kelly said that in addition to assigning Tales From the Bed as a summer reading assignment and holding the assemblies and the Community Book Event, each of the grade level government groups plan to hold fundraising/awareness raising events, and the school-wide All School Council (ASC), plans to hold a major school-wide and community fundraising/awareness raising event in the spring, featuring an appearance by the Harlem Wizards Basketball Team.
Valerie Estess said she is grateful to Watchung Hills for its interest in Project A.L.S., and supporting A.L.S. research.
“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,” Valerie Estess said. “We are excited and energized to partner with the young superstars at Watchung Hills.”
At the assemblies on Oct. 14, Estess encouraged students to use all the media available to them to reach out and raise awareness about A.L.S. and all related brain diseases. She said unfortunately just about everyone in the future will be touched by these diseases, either directly in their families, or in families that they know.
She said she recognized that the students probably know better than anyone how to maximize the use of new media to reach the broadest audience. She asked the students to be thinking of, sharing, and collaborating ideas with Project A.L.S. about how best to spread the word about the importance of collaborating research to fight A.L.S. and related brain diseases. She said more information and ways to share ideas can be found on the Project A.L.S. Web site, www.projectals.org.
“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.
The Web site continues: “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 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.