October 5th is a special day for our family as we observe Pause for The GFPD, an annual awareness day dedicated to The Global Foundation for Peroxisomal Disorders (GFPD). We invite readers of The Acton Exchange to join a fellow A-B family and PAUSE for our son and others affected by peroxisomal disorders across more than 40 countries.
We lost our son, Lincoln Ray Usher, on June 30, 2024, after a courageous battle with PBD-ZSD (peroxisomal biogenesis disorder in the Zellweger spectrum). He was just two years old, one of fewer than 1,000 children worldwide with this rare, terminal disease. Lincoln brought so much love to our lives. His infectious smile and beautiful blue eyes could brighten any room. His laughter was contagious, and his spirit, unbreakable. Though his life was tragically brief, Lincoln taught us to slow down, cherish the small moments, and find joy in each day.
Pause for The GFPD gives our family hope for the future. Founded in 2010 in Tulsa, Oklahoma, this 501(c)(3) nonprofit supports families affected by peroxisomal disorders and funds crucial medical research. On October 5th, we celebrate the GFPD’s achievements over the past 14 years in advancing research and awareness, while honoring the beautiful children impacted by this rare condition.
This day is not just about raising awareness; it’s a call to action. Together, we can help the GFPD amplify the voices of patients, families, caregivers, scientists, and medical professionals advocating for treatments and cures. Raising public awareness can be transformative—it provides hope and paves the way for groundbreaking research that may lead to new, lifesaving treatments.
Participating in Pause for The GFPD also serves as a comforting reminder that our loved ones are still cherished and remembered. We urge everyone reading this to get involved. Visit the GFPD website at http://www.thegfpd.org or find us on social media @thegfpd to learn how you can help make a difference and discover the vital work being done to support those affected by peroxisomal disorders.
With gratitude,
Jamie & Chris Usher
