ADVOCACY
At local, state, and federal levels, Bubba's Light advocates and empowers others. Read below to learn more about their advocacy efforts.
Where Personal Story Meets Policy
Katie and Ted, parents to Bubba and co-founders of Bubba’s Light, generously give their time and energy to meet with legislators in South Carolina. By sharing their family’s experiences, they help lawmakers understand the real-life impact of rare disease and the urgent need for research, support, and policy solutions.
Their advocacy ensures that families affected by rare disease are not only seen and heard, but represented when decisions are made.
Katie Sacra, rare disease caregiver and parent, and Daniella, patient advocate, speak to the FDA at the EL-PFDD meeting for peroxisomal disorders.
EL-PFDD Meeting with the FDA
A key aspect of advocacy is sharing your story. At the Externally Led Patient-Focused Drug Development (EL-PFDD) meeting in Washington, D.C., Co-Founder Katie Sacra of Bubba’s Light, alongside other rare disease patients and caregivers, spoke to the FDA about the most common symptoms and challenges faced by those with peroxisomal disorders. They also discussed current treatment approaches, barriers to care, and desired outcomes for clinical trials.
Portraits of Caregiving
in the U.S.
With her volunteer work on the National Alliance for Caregiving's National Caregiver Advocacy Collaborative, Katie was able to become involved in and share her story to elevate the voices of caregivers and the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act.
In the U.S., state health programs rely on caregivers who provide about $470 billion in unpaid health care services to family, friends, and neighbors. Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in 2018, which established the Family Caregiving Advisory Council tasked with creating the country’s first national Family Caregiver Strategy.
​
As part of a series of family caregiver vignettes, Katie's interview was selected as one of 30 to elevate and bring the caregiver's voice and their message to convey the Council's recommendations to the general public and policymakers.
Attending Virtual Events and Meetings to Make a Difference
Katie is a rare disease carrier and a parent caregiver, so she joins other rare disease patients, caregivers, and advocates at events like Rare Across America, Rare Disease Week, and Rally for Medical Research to share their stories and help make a difference for the 1 in 10 Americans with a rare disease.
