EVENTS
Join Bubba's Light in organizing and participating in events!
RARE DISEASE DAY
February 28, 2025
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.
