Amy and her husband, Steve, are the parents of five children, including Sierra, who suffered traumatic brain injury in a car crash in 2020 when she was 17 years old. Sierra was airlifted from that crash to DHMC and was not expected to live. After Sierra had been two days in a medically induced coma, pediatric doctors at the hospital told Amy and Steve to call in a priest to perform Last Rites for their daughter. Because of the crash, Sierra had been one hour without oxygen and had shown no brain activity. A hospital surgeon overrode the original diagnosis and performed surgery in which he took out part of Sierra’s skull to release pressure on her brain.
During Sierra’s time in a coma, Amy started a Facebook Group to provide support for people in similar circumstances. Individuals from all over the world joined the group and provided support for Sierra and her family. When she came out of her coma, Sierra had to learn to do everything all over again—walk, etc. People don’t simply “wake up” from a coma; for a time, they are not very aware of events and people around them. Sierra required 24/7 caregiving. Because of the support she received from all around the world, Sierra wanted to respond by bringing “kindness into the world.” Unmask the Invisible is part of that response.
After a person with a serious injury such as Sierra’s leaves hospital care, gaps appear in the support available. Insurance, for example, stops paying. Even during a patient’s time in hospital, the hospital provides support for the patient and the family present in the room, but not for the rest of the family—such as Sierra’s twin sister and her other siblings. To help meet these needs, after eight months of planning, Amy founded Unmask the Invisible as a 501c3 charity in February of 2023 (www.unmasktheinvisible.org). The process for starting such a charity is daunting: concept development, marketing plan, grant writing. Amy did not want the organization to fizzle out after five years.
Unmask the Invisible is designed to provide support for TBI survivors that other TBI charities don’t attempt to address. Love Your Brain, for example, is a TBI-focused charity that features meditation and yoga. Some TBI survivors don’t have the capacity to participate in such activities and may not be able to eat by themselves or even to move. Unmask the Invisible wants to be able to meet the needs of these individuals and their families by focusing on caregiving and rehabilitation, etc.
The development of programming for Unmask the Invisible began with a London researcher who interviewed 236 siblings of TBI survivors. These family members felt invisible. Unmask the Invisible has created educational programs for schools, hospitals, social workers, etc., explaining how better to interact with brain-injury survivors and caregivers. These programs include “The Sierra Project”— a home for programs that promote creativity and resiliency for traumatic brain injury survivors, their siblings, and their caregivers via art. Art has always been very important to Sierra Longmoore and was something she enjoys as part of her rehabilitation—a “paint it forward.”
Recently Unmask the Invisible sponsored a guided art event in Hanover entitled “This Is Your Brain on Art”—giving instruction on multiple phases of how to paint for survivors and their siblings. Unmask the Invisible has also collaborated with Dartmouth’s Thayer School of Engineering to develop weighted paintbrushes for survivors to use in their artwork. Up until this product was developed, only weighted pencils had been available on Amazon for handicap use.
“The Halo Fund,” an early-stage venture capital group, has backed research into non-invasive TBI therapies such as the use of hyperbaric oxygen chambers, and Unmask the Invisible has developed a resource list bringing together all such newly developed treatments so that survivors and their families will not have to do the research that Amy had to undertake. At the present time, insurance doesn’t pay for these therapies,
Unmask the Invisible sponsors local retreats for caregivers while participating in numerous community charity events—the Prouty, a soccer fundraiser for players experiencing residual injuries, and a fundraiser (Chuckles for Charities) scheduled for November 16 in White River Junction. Amy has published a book entitled Unmask the Invisible, available on Amazon for $20, and Unmask the Invisible has merchandise such as a ballcap that they sell for fundraising at their events. Amy herself continually schedules speaking engagements.
Sierra was a junior when she suffered her injury, and as she entered her senior year, she needed special help from the school district through programming that had been originally designed to assist students who had been born with their special handicaps, not for trauma survivors. Shortcomings such as these are examples of what Unmask the Invisible is designed to address.
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