Three passionate teenagers, Abby Wen, Claire Youn, and Katie Liu hatched a plan to help a little boy named Raiden Pham, who is facing a silent adversary – UBA5 disease. Raiden, just 3 years old, was caught in the grips of this rare and life-threatening condition, which had shaken his world and touched the hearts of all who knew him. Their hearts swelled with empathy for Raiden and his family, propelling them to organize a music benefit concert for them.
Raiden’s journey had begun like any other child’s, marked by the joyous moments of a loving family. However, fate had other plans for Raiden and his parents, Linda and Tommy Pham. At the tender age of 3 months, Raiden’s life took a drastic turn. The playful giggles were replaced by painful cries, and his once-steady developmental steps faltered. Raiden must be tube-fed, cannot sit independently or control his head movement. Sadly, doctors delivered the devastating diagnosis – UBA5 disease.
UBA5 disease, caused by genetically inherited mutations of the UBA5 gene, manifested in severe health outcomes, including motor control issues, cognitive challenges, growth impairments, and other medical complications. The disease ultimately progressed into chronic seizures and early death, typically within the first few years of life.
In the face of this heart-wrenching news, Raiden’s parents refused to surrender to despair. Their determination was evident on their website, where they declared, “While Raiden is at high risk for seizures, they have not yet begun and so we are racing against time. If we can deliver gene therapy for Raiden soon enough, we may be able to reverse his disease trajectory and give him a better quality of life. We are not giving up on him.”
Inspired by Raiden’s strength, Abby, Claire, and Katie decided to channel their empathy into action. They envisioned a music benefit concert, a gathering that would not only fill the air with melodies but also symbolize hope, unity, and compassion. This concert, set to grace the stage on NIKE‘s giving day at NIKE campus. It is not merely a gathering of melodies; it is a symphony of hope, a testament to the strength of unity and the boundless compassion of the human spirit.
The proceeds from this concert will serve as a beacon of hope, guiding researchers at Oregon Health & Science University (OHSU) in their quest to understand, treat, and ultimately conquer UBA5 disease. The collaboration between OHSU and Baylor College of Medicine has illuminated a path forward, shedding light on the complexities of this rare genetic condition. Dr. Jonathan Pruneda and Dr. Ruth Napier, dedicated scientists at OHSU, have pioneered a study that not only bridges the gap in knowledge but also provides a glimmer of hope for families like the Phams.
As the day of the Music Benefit Concert for Raiden Pham draws near, we extend an earnest invitation to everyone that is reading these words. Join us in this battle against UBA5 disease. Be a part of Raiden’s story, your support and generous donation will leave an indelible mark on Raiden’s journey and the lives of countless others fighting similar battles.
The Music Benefit Concert for Raiden Pham is not just an event; it is a declaration of our shared humanity. It is a promise that no child, no family, will ever face the darkness alone. Together, we are a symphony of hope, a melody of healing, and a testament to the power of love in the face of adversity.