In Loving Memory, with Hope
The story of “Mission Control” at Hope Biosciences Research Foundation
Walk into Hope Biosciences Research Foundation and you will notice a new sign gracing the wall these days, eye level by the door to the large room where the entire Hope team works. “Paxton Bernal Mission Control Room,” it reads, silver letters arcing over an inky black background. Then, “In loving memory, with hope for all.”
Who is it for — a benefactor? A patient? No, this plaque commemorates someone we never had a chance to welcome. In understanding this sign you step into the spirit of what Hope Biosciences Research Foundation wants patients, families, community supporters, and all who trust Hope to know about what makes the heart of this organization beat strongly, about how this work is done and why. More importantly, in understanding this sign, you meet Paxton.
Hope had the privilege of meeting the Bernal family late in 2019, including then two-year-old Paxton, younger brother Emmett James, and their parents. Eric and Amanda sought options to improve Paxton’s quality of life, some sort of respite from cerebral palsy’s grip on their son. They found news of an FDA-authorized expanded access protocol conducted with another young boy suffering from cerebral palsy and reached out to Hope. Bright-eyed Paxton seemed a good candidate for cell therapy.
The process began, but the rate of progress in FDA-authorized research can be agonizingly slow. Paxton passed away on December 3rd, 2020, before he could receive treatment. He was four years old.
“I remember when I heard about Paxton’s passing from our lead Nurse, Sherry,” reflects Donna Chang, Founder, Hope Biosciences Research Foundation. “At the time we were working on the formal requirements to open treatment to him, but the process did not move quickly enough. We never had a chance to welcome him here. We never had a chance to treat him. Paxton’s story had been shared with the team, and we felt deeply connected to him. We knew his face from his pictures, and the love evident in every interaction. As a mother my heart has never stopped breaking for his family. Now, Paxton’s memory is a daily reminder that we must work faster, we must work harder, we must not give up.”
During a growth-filled last year, Hope’s twelve-member team moved into a large, communal room affectionately dubbed “mission control.” Laughter is frequent, collaborative chatter is brisk, and the pace of work even faster across tables and screens where nurses and medical assistants work with software designers, data managers, and clinical researchers to manage the seemingly endless litany of parts, pieces, and people required to conduct FDA-authorized research to the scope and scale that occurs here. Christening this space the “Paxton Bernal Mission Control Room” serves not only as a way to honor him, but to remind each team member daily, on a deeply personal level, why they are here, why Hope’s purpose is so important.
In November, the Bernal family was on site when HBRF welcomed a full house of community supporters to a premiere screening of “The Long Haul,” coverage of Hope’s globe-leading work in “Long Haul” COVID. Paxton’s plaque was on display at the front of the theatre. Before and after the film screening, team members made their way to the front to hug and thank the family whose impact is so profoundly felt.
“Paxton made a difference,” Chang told the visibly moved audience. “He has a legacy, and part of that legacy is right here, with us. It is a privilege to think of him every day.”
In loving memory, with hope for all.
