ADVOCACY
At local, state, and federal levels, Bubba's Light advocates and empowers others. Read below to learn more about their advocacy efforts.
2025 Rare Disease Week
Thanks to the support provided by EveryLife Foundation for Rare Diseases, Bubba's Light's founders, Ted and Katie, will be traveling to Washington, D.C. to share their story and help others to do the same. Katie has been serving as a Team Coordinator for more than a dozen fellow South Carolina advocates to help them prepare for meetings with their senators on Capitol Hill. All attendees will have the opportunity to share their stories and help representatives better understand the needs of the rare disease community. Additionally, they will attend a Legislative Conference on Capitol Hill with hundreds of others to learn more about some of the policies that are needed to make a positive difference for the one in ten Americans living with rare diseases.
To learn more about the policies that can help individuals with rare diseases, including the rare disability of deafblindness caused by Bubba's rare disease, download the one-pager shown on the right.
EL PFDD Meeting
A key aspect of advocacy is sharing your story. The FDA and other rare disease stakeholders heard from Co-Founder Katie Sacra of Bubba's Light and other rare disease patients and caregivers in Washington, D.C., about the most common symptoms and challenges for those affected by peroxisomal disorders, as well as current approaches to treatments, barriers, 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.
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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.
Speaking with Legislators
Katie and Ted donate their time and energy to share their story with legislators in South Carolina in order to raise awareness and elevate the voices of all affected by rare disease.
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.
