EVENTS
Join Bubba's Light in organizing and participating in events!
RARE DISEASE DAY
February 28, 2026
Rare Disease Day is observed every year on the final day of February, this year on February 28th. It’s a powerful reminder that millions of families around the world are navigating life with a rare diagnosis, often without clear answers or immediate treatment options. When TJ (“Bubba”) was diagnosed with a rare disease, his mom, co-founder of Bubba’s Light, experienced a level of loneliness and uncertainty that no parent should have to face. Sadly, that same story continues for many families today. After hearing the words “your child has a rare disease,” they are often sent home without a roadmap, without support, and without connection to others who understand. Throughout the month of February we’ll be posting rare disease facts and information on Facebook to help educate and spread awareness. We invite you to follow along, share the posts, and help amplify the voices of the more than 300 million people worldwide living with a rare disease. We love shining a spotlight on rare diseases each February in honor of Rare Disease Day, but at Bubba’s Light, our commitment to advocacy does not end when the month does. We are proud to support and advocate for individuals and families impacted by rare diseases all year long, working to ensure that no family has to walk this rare path alone. \
Get involved and raise awareness with us by clicking below and sharing rare disease facts with your community.
Bubba's Light Co-founder, Katie Sacra, at the NORD Breakthrough Summit in Washington, D.C.
Bubba’s Light at the NORD Breakthrough Summit
October 2025 Washington, D.C.
In October 2025, Rare Parents and Co-Founders of Bubba’s Light, Ted and Katie, attended the NORD Breakthrough Summit. Joining more than 900 attendees, they collaborated with fellow advocates, researchers, clinicians, and policymakers united in improving the lives of those affected by rare disease. Throughout the summit, they gained valuable insight into advancements in treatments, research initiatives, and policy efforts that directly impact rare disease patients and families. They are deeply grateful for the opportunity to build meaningful partnerships and bring back knowledge, resources, and renewed momentum to support the rare disease community here in South Carolina.
RARE DISEASE DAY
February 28th
Each year, Rare Disease Day takes place on the last day of February, which this year is February 28th. By sharing rare disease facts with your family, friends, and community, you can help us raise awareness about rare diseases! Bubba's Light co-founder and TJ's (aka Bubba's) mother felt immense isolation after he was diagnosed with a rare disease. Like her, many families today are still sent home after their child is diagnosed with a rare disease without treatment, connection, or hope. In honor of Rare Disease Day, on February 28th, we'll be sharing facts about rare diseases on Facebook all month long. Please join us in raising awareness and supporting the more than 300 million people worldwide who are affected by rare diseases.
By clicking below, you can share rare disease facts on your
Facebook page to help us
raise awareness.
Bubba's Light Co-founder, Katie Sacra, alongside a rare disease patient, both speaking to the FDA and other rare disease stakeholders in Washington, D.C.
Externally-Led Patient Focused Drug Development Meeting for Peroxisomal Disorders
May 28, 2024 Washington, D.C.
In Washington, D.C., Ted and Katie, cofounders of Bubba's Light and parents of Bubba, attended an Externally-Led Patient-Focused Drug Development (EL PFDD) meeting with the FDA and other rare disease stakeholders. Ted served as a key opinion leader sharing insight about his and his son's experience with a rare disease. While Katie shared in a variety of ways, she also addressed the specific mobility challenges her son faces as a result of this rare disease. Furthermore, Katie also played a vital role in bringing this meeting together. In her role as Director of Family Programs for the GFPD, Katie coordinated all aspects of planning, recruiting, and executing projects with the Project Lead, Dr. Mousumi Bose. As part of the process, Katie helped develop a two-year roadmap and the Letter of Intent, which was quickly accepted by the FDA. Throughout the project, she met regularly with FDA staff and the lead to ensure timelines and guidelines were being followed. It was Katie's responsibility to develop internal and public agendas, identify a variety of patient and caregiver speakers to speak on selected topics, coordinate invitations and track all speakers, assist with speaker preparation, identify set up for in-person venue needs from AV to stage accessibility, set up online platforms, organize promotion requirements, and coordinate all meeting registration. Katie is committed to helping all families impacted by rare diseases, regardless of her role, whether it be as a mom and caregiver of Bubba, founder of Bubba's Light, or serving families through the GFPD.
