The Kennedy Ladd Foundation, Inc.

Meet Kennedy

Kennedy is a bright, joyful, and resilient 10-year-old diagnosed with a rare disease called MPS1 Hurler Syndrome.

Kennedy's journey has included:

Through it all, Kennedy has shown extraordinary courage and strength. Her resilience inspires our mission to find a cure for MPS1 and bring hope to families like ours.

What Is MPS1 Hurler Syndrome?

MPS1 Hurler Syndrome is a cruel and progressive rare disease that affects every part of the body—airways, eyes, organs, bones, and more. These children live in constant pain, struggle to keep up with their peers, and face challenges that slowly rob them of the vibrant lives they deserve. There is no cure—yet. But together, we can change that.

Our Mission

Through the Kennedy Ladd Foundation, we aim to fund research, support families, and spread awareness for rare diseases like MPS1. Our ultimate dream? A cure that ends the suffering these children face.

Why Rare Disease Day Matters

Rare diseases like MPS1 don’t get the attention or funding they need. On Rare Disease Day, we’re asking YOU to join our mission to bring hope and action to the millions of families affected by rare disease.

How You Can Help

Your donation—no matter the amount—makes an impact.

Join the Movement

Facebook: The Kennedy Ladd Foundation

Instagram: the_kennedy_ladd_foundation

Twitter/X: https://x.com@Ladd_foundation

YouTube: The Kennedy Ladd Foundation

Website: https://Kennedyladd.org

#RareDiseaseDay #HopeForRare #TogetherForRare #CureMPS1

Together, we can give families like ours the gift of hope. Thank you for being part of this journey.

Allie Ladd

Mom of 2 kids fighting MPS1 Hurler Syndrome

Praying, begging, and believing in better treatment options

Meet Titus:

Titus Barrett-Weber is not just a name—he’s a bright, resilient 5-year-old who lights up every room he enters. Born on March 26, 2019, Titus was diagnosed with MPS1 Hurler Syndrome, a rare and progressive genetic disorder that affects nearly every part of his body. Since then, his journey has been nothing short of a battle.

At just five weeks old, Titus began weekly enzyme replacement therapy and later endured a bone marrow transplant in hopes of slowing the progression of the disease. He has faced chemotherapy, lengthy ICU stays, feeding tubes, and countless medical challenges. Through it all, his laughter, hugs, and unshakable joy inspire everyone around him.

The Race to End MPS1:

MPS1 Hurler Syndrome is a devastating disease. Current treatments can slow its progression, but they cannot stop it or undo the damage already done. Without a cure, children like Titus will continue to face a lifetime of surgeries, therapies, and physical challenges.

This is why we’re racing against time—to fund life-saving research and find a cure for MPS1. Every day matters, not just for Titus but for all children fighting this relentless disease.

How You Can Help:

Your donation can be the difference. Every dollar raised through this campaign will go directly to funding research, providing essential support to families, and moving us closer to a cure. Together, we can rewrite the story of MPS1 and give children like Titus the futures they deserve.

Join Us in the Fight:

Titus’s story is one of courage, hope, and determination. Let’s make it a story of victory over MPS1. Donate today and share this campaign with your friends and family. Together, we can end the suffering caused by this cruel disease and bring hope to countless families.

Every child deserves a chance to laugh, play, and grow up free from pain. Let’s give that chance to Titus and so many others.

I often hear, "They look so good." And yes, Kennedy and Lincoln may appear like any other children—smiling, playing, and enjoying the little things in life. But behind those smiles lies a heartbreaking truth that no one can see.

Kennedy and Lincoln are fighting for their lives every single day, battling a rare, terminal disease called MPS1 Hurler Syndrome. While they might look "good" on the outside, what you don't see is the cruel, progressive disease slowly taking over their bodies. Every part of them—every organ, every joint, every bone—is being attacked by this devastating condition. They are losing the ability to walk, to move freely, to breathe without assistance, and so much more.

Imagine hearing that your child’s life will be cut short—statistics say they won’t live past 20. This is the reality for Kennedy, Lincoln, and every child living with MPS1. But that’s not the only horror we face. Along the way, they suffer the constant side effects of this disease. It’s a relentless battle that steals from them, day by day.

I see the pain every day—the physical toll on their bodies, the emotional exhaustion, the trauma. It’s hard to show it. It’s hard to explain the suffering that’s invisible to the outside world. The hospital visits, the surgeries, the physical therapy, and the treatments are part of our daily lives, and yet the pain, the loss of future, is something that’s hard to convey. It’s something we live with, but it’s hard to show others the true weight of it.

That’s why I’m sharing our story. Because while Kennedy and Lincoln might look “good” on the outside, they are living with a terminal illness that’s taking everything from them. And the families living with MPS1 live this reality every day.

The Kennedy Ladd Foundation was created to raise awareness and bring hope to families like ours. We’re dedicated to funding research that could save lives, supporting treatments, and ensuring that no child with MPS1 is left behind. But we can’t do it alone. We need your help.

Please, don’t just look at the smiles. Don’t just focus on the outward appearances. Help us fight for a cure, help us find better treatments, and help us bring hope to children and families who are suffering in silence. Your donation, your support, and your sharing of our story can help end the suffering of MPS1 and give these children the future they deserve.

From the bottom of my heart, thank you for your support.

With love and hope,

Allie Ladd

Mom to Kennedy & Lincoln, co-founder of the Kennedy Ladd Foundation