Bubba's Light

10/15/2026

🕯️ Wave of Light | October 15 at 7:00 p.m. Local Time

Today, we join people around the world in recognizing Pregnancy and Infant Loss Remembrance Day through the annual Wave of Light.

At 7 p.m. local time, candles will be lit across time zones in memory of babies gone too soon and in honor of the families who carry their love with them.

Pregnancy and infant loss touches families in many ways. Today, we remember the babies gone too soon, including those we have lost to rare diseases, and honor the families who carry their love, memories, and stories with them.

At Bubba’s Light, we believe in the power of bringing light to experiences that deserve to be seen, heard, and understood. Tonight, we honor the babies gone too soon, recognize the families who carry their memories, and help shine a light on pregnancy and infant loss through awareness, compassion, and remembrance.

🕯️ Will you join us? Light a candle at 7 p.m. tonight and share your light in remembrance of the babies whose lives, however brief, will always matter.

💚 From our Bubba’s Light family to yours, we remember with you.

10/05/2026

TODAY, WE’RE ASKING OUR BUBBA’S LIGHT FAMILY TO PAUSE.

Pause for Peroxisomal Disorders.
Pause for the families receiving a rare diagnosis today.
Pause for the families who are still searching for answers.
Pause for the families who may not yet know that support, resources and a community are out there.

Then, help us raise awareness.

Our family went far too long without the tools, resources, connections and people we have today. When Bubba was diagnosed with Zellweger Spectrum Disorder, we didn’t have the network of support that exists now.

And we know how incredibly isolating a rare diagnosis can be.

Zellweger Spectrum Disorder affects approximately 1 in 50,000 people, and there are more than 10,000 known rare diseases. Finding another family who understands, finding healthcare providers who know what you’re dealing with, finding reliable information and figuring out where to turn can feel overwhelming.

That’s why organizations like The Global Foundation for Peroxisomal Disorders(GFPD) matter so much.

They help bridge those gaps.

They connect families with families.
They connect families with knowledgeable healthcare professionals and resources.
They help families navigate.
They create community.
They support research.
They help turn a rare diagnosis into a path forward.

Bubba’s Light is proud to support that work.

Because nobody should receive a rare diagnosis and feel like they are the only person in the world facing it.

Today, on PAUSE with the GFPD, we’re asking our community of friends and family of Bubba to do something that may seem small, but can make a very real difference:

Share.

Share the GFPD’s post.
Tell someone what Peroxisomal Disorders are.
Help someone learn that resources and support exist.
Help us make sure the next family receives a diagnosis with a little more knowledge, a little more connection and a lot less isolation.

You never know who might see your post at exactly the moment they need it.

One share can create awareness.
Awareness can create connection.
Connection can change a family’s life.

So today, please PAUSE with us.

For Bubba (TJ)
For the families who came before us.
For the families who are here today.
And for every family who will receive a rare diagnosis tomorrow.

Nobody should have to navigate it alone.

https://youtu.be/jTaVPSEgvYo?is=ad4Z3y6KehVRr5rG

Today is , our annal awareness day! We ask that e...

10/05/2026

TODAY, WE’RE ASKING OUR BUBBA’S LIGHT FAMILY TO PAUSE.

Pause for Peroxisomal Disorders.
Pause for the families receiving a rare diagnosis today.
Pause for the families who are still searching for answers.
Pause for the families who may not yet know that support, resources and a community are out there.

Then, help us raise awareness.

Our family went far too long without the tools, resources, connections and people we have today. When Bubba was diagnosed with Zellweger Spectrum Disorder, we didn’t have the network of support that exists now.

And we know how incredibly isolating a rare diagnosis can be.

Zellweger Spectrum Disorder affects approximately 1 in 50,000 people, and there are more than 10,000 known rare diseases. Finding another family who understands, finding healthcare providers who know what you’re dealing with, finding reliable information and figuring out where to turn can feel overwhelming.

That’s why organizations like The Global Foundation for Peroxisomal Disorders (GFPD) matter so much.

They help bridge those gaps.

They connect families with families.
They connect families with knowledgeable healthcare professionals and resources.
They help families navigate.
They create community.
They support research.
They help turn a rare diagnosis into a path forward.

Bubba’s Light is proud to support that work.

Because nobody should receive a rare diagnosis and feel like they are the only person in the world facing it.

Today, on PAUSE with the GFPD, we’re asking our community of friends and family of Bubba to do something that may seem small, but can make a very real difference:

Share.

Share the GFPD’s post.
Tell someone what Peroxisomal Disorders are.
Help someone learn that resources and support exist.
Help us make sure the next family receives a diagnosis with a little more knowledge, a little more connection and a lot less isolation.

You never know who might see your post at exactly the moment they need it.

One share can create awareness.
Awareness can create connection.
Connection can change a family’s life.

So today, please PAUSE with us.

For Bubba (TJ)
For the families who came before us.
For the families who are here today.
And for every family who will receive a rare diagnosis tomorrow.

Nobody should have to navigate it alone.

Today is , our annual awareness day! We ask that each of you do your part to help us raise awareness of peroxisomal disorders and their impacts for our , families, medical and scientific community, and community.

How do you get involved?

1. Print your sign at https://thegfpd.org/pause/ and fill out who you are PAUSING for (hint it can be a Warrior, scientist, or caregiver. It can also be Research, HOPE, or GFPD Families.)

2. Take a picture and post it to your social media! Be sure to tag the GFPD and use the hashtag

3. Share this video to help us raise even more awareness!

This simple task makes a BIG impact! Thank you for your support!

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. 💕

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

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

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.

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.