Bubba's Light

Bubba's Light Bubba's Light is a non-profit organization founded in 2020 by Ted and Katie Sacra in Myrtle Beach, SC.

Bubba’s Light is a 501(c)(3) nonprofit connecting the rare disease community and supporting individuals with rare diseases through education, research, and critical needs like travel for medical care—bringing hope when it’s needed most. Ted and Katie are the parents to TJ (aka Bubba) who is currently living with a terminal rare disease. At Bubba's Light we are committed to connecting people in the

rare disease community, as well as funding education, research, and support for these individuals. We believe in improving the quality of life and empowering those who have, love, care for and/or work with individuals with rare diseases, including rare cancers.

Happy Mother’s Day 💜To the mothers in our rare disease community—those celebrating milestones, facing challenges, advoca...
05/10/2026

Happy Mother’s Day 💜
To the mothers in our rare disease community—those celebrating milestones, facing challenges, advocating fiercely, and loving deeply—we see you.

And to those carrying grief alongside love, we honor you too.

You are not alone today. 💕

Tonight, Bubba’s Light continues to honor all bereaved mothers. You are seen, deeply loved, and never alone. We are hold...
05/04/2026

Tonight, Bubba’s Light continues to honor all bereaved mothers. You are seen, deeply loved, and never alone. We are holding space for you this evening and sending wishes for peace and comfort.

If you’re thinking of a bereaved mother tonight, a simple message, speaking her child(ren)’s name, or sharing a memory can be a meaningful way to honor her and her child(ren).

For those who want to better support bereaved parents, we’re sharing a helpful resource below.

Link to Resource:https://thegfpd.org/wp-content/uploads/2025/11/CARE-Card-7.pdf

Today, Bubba’s Light honors all bereaved mothers. You are seen, loved, and never alone. We extend our heartfelt wishes f...
05/03/2026

Today, Bubba’s Light honors all bereaved mothers. You are seen, loved, and never alone. We extend our heartfelt wishes for peace and comfort.

If you know a bereaved mother, consider reaching out today with a message of love. Speaking her child(ren)’s name, sharing a memory, or simply letting her know you’re thinking of her can be a meaningful way to honor her and her child(ren).

For those who want to better support bereaved parents, we’re sharing a helpful resource below.

Link to Resource:https://thegfpd.org/wp-content/uploads/2025/11/CARE-Card-7.pdf

Today is Undiagnosed Day. A day for visibility. For solidarity. And for action.An estimated 350 million people worldwide...
04/29/2026

Today is Undiagnosed Day.

A day for visibility. For solidarity. And for action.

An estimated 350 million people worldwide are living with an disease—still searching for answers, clarity, and care.

For many, the journey to a diagnosis is not a straight path. It’s a road filled with detours—endless appointments, long waitlists, complex testing, financial strain, and more questions than answers.

For our family, this journey is deeply personal. Bubba endured a long, challenging, and exhausting diagnostic odyssey—one that, today, could potentially be shortened through newborn screening capable of identifying his rare disease shortly after birth.

A timely and accurate diagnosis changes everything. It opens doors to support, services, community, and in many cases, life-changing—and even life-saving—treatments.

is a reminder that this is not just a personal struggle—it is a global health crisis. And it calls on all of us—families, advocates, healthcare providers, and policymakers—to be part of the solution.

Join us in raising awareness, amplifying voices, and advocating for a future where no one is left without answers.

Bubba's Light was honored to support four rare families in attending the GFPD Southeast Regional Meetup in Atlanta this ...
03/31/2026

Bubba's Light was honored to support four rare families in attending the GFPD Southeast Regional Meetup in Atlanta this past weekend.

For rare disease families, these spaces transform isolation into community. They create opportunities to connect with others who truly understand—to share experiences, give and receive support, and learn side by side.

They are also where progress happens—bringing together families, researchers, and professionals in conversations that matter. Conversations where families are not just heard, but valued as partners in progress.

We are deeply grateful to our community for making opportunities like this possible. Because of your generosity, we’re able to help families access moments like these—moments that truly matter and make a difference in the lives of those impacted by rare diseases.

Every story matters.For families in the rare disease community, our stories are more than personal—they are powerful. Th...
02/28/2026

Every story matters.

For families in the rare disease community, our stories are more than personal—they are powerful. They bring faces to policies, urgency to conversations, and humanity to decisions being made on Capitol Hill.

Ted and Katie, co-founders of Bubba's Light, share their story as parent-caregivers to their adult child with a rare peroxisomal disease—and as carriers themselves. With no family history, they never expected to hear those words or to experience the isolation and uncertainty that followed. But rare disease is not as rare as many think. Today, 1 in 10 Americans is living with a rare disease, and each person and family carries a story that deserves to be seen and heard.

Today, on Rare Disease Day, we join millions around the world in raising awareness and shining a light on this community. While this day marks the culmination of an incredibly meaningful Rare Disease Week and Month, our commitment does not end here. We will continue sharing stories and educating throughout the year—because awareness leads to understanding, action, and change.

Ted and Katie are deeply grateful for the opportunity to share their story and help share other stories too, because each is part of a larger community that deserves to be heard. By sharing lived experiences, we help create space for others to share theirs. Together, our voices elevate the priorities, needs, and realities of the rare disease community in ways that statistics alone never can.

If you’ve ever wondered whether your story makes a difference, it does. Stories open doors. Stories change perspectives. Stories help drive change.

We are also incredibly grateful for everyone who has followed along, and taken the time to learn, share, and amplify rare disease facts and advocacy. Every conversation, every share, and every moment spent helping shine a light on rare diseases brings us closer to a future where no family feels alone and every voice is heard.

We remain committed to sharing facts and stories—so that others feel seen, priorities are elevated, and together, we can help bring light to every rare disease. 💚

Today is Rare Disease Day! There’s still time to help us raise awareness and support those living with rare diseases. He...
02/28/2026

Today is Rare Disease Day! There’s still time to help us raise awareness and support those living with rare diseases. Here are some meaningful ways you can show your support today:

🦓 Show your stripes and tell others why you are wearing them
🔄 Like and share posts with rare disease facts and stories
📣 Use your voice to share your own rare disease story
💚 Donate to Bubba’s Light, whose mission is to support those affected by rare diseases

Together, we can raise awareness, educate others, and shine a light on rare diseases.

Why are we asking you to show your stripes today? 🦓Today is Rare Disease Day, and the zebra is the symbol for rare disea...
02/28/2026

Why are we asking you to show your stripes today? 🦓

Today is Rare Disease Day, and the zebra is the symbol for rare diseases. Why?

Doctors are taught: “When you hear hoofbeats, think horses, not zebras,” meaning the most common diagnosis is usually the right one. But for millions of people living with rare diseases, those hoofbeats really are zebras.

Showing your stripes today helps raise awareness for the rare, the often overlooked, and the families still searching for answers.

Help us shine a light by liking, sharing, and showing your stripes. 💚

“Alone we are rare. Together we are strong.” 🦓Today, on Rare Disease Day (February 28th), we stand alongside the 300 mil...
02/28/2026

“Alone we are rare. Together we are strong.” 🦓

Today, on Rare Disease Day (February 28th), we stand alongside the 300 million people worldwide living with a rare disease, their families, and the communities who support them.

Together, we raise awareness, advocate for change, and show every individual and family that they are not alone.

Join us today by showing your stripes, sharing this message, and helping shine a light on rare diseases.

Quiz time! Which animal is the symbol for rare disease?If you chose option C, you’re right—it’s the zebra! 🦓 Zebras remi...
02/28/2026

Quiz time! Which animal is the symbol for rare disease?

If you chose option C, you’re right—it’s the zebra! 🦓 Zebras remind the medical community to look beyond the “common” diagnosis—because sometimes, when you hear hoofbeats, it really is a zebra.

Today, on Rare Disease Day (February 28th), help us raise awareness by showing your stripes 🦓 Together, we can shine a light on rare diseases and the millions of families they impact.

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Myrtle Beach, SC

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