The Kennedy Ladd Foundation, Inc.

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The Kennedy Ladd Foundation, Inc. About Us: The Kennedy Ladd Foundation, Inc. The Kennedy Ladd Foundation, Inc. KLF provides education, support and hope to families living with MPS1. Pray. Be Kind.

The Kennedy Ladd Foundation’s mission is to bring HOPE (Helping One Person Everyday) to families affected by MPS1 by advocating, educating, improving the quality of life, and finding a cure. (KLF) was created in honor of Kennedy Ladd, who was diagnosed with MPS1 (Hurler Syndrome) on March 30th, 2015. Our mission is driven by love, community support, and a commitment to making a difference in the lives of those affected by these conditions. Our Mission:
• Raise Awareness: We work tirelessly to educate the public about MPS1 and its devastating side effects.
• Support Research: We fund and support scientific research aimed at finding cures and improving treatments for MPS1.
• Aid Families: We provide resources, events, and support to families fighting MPS1. Our Impact: Since our foundation's establishment and successful attainment of 501(c)(3) status in 2017, we have made significant strides:
• Raised substantial funds for research and awareness campaigns.
• Made impactful contributions to support national organizations like The National MPS Society and the University of Minnesota.
• Eased the burden on families through our iPad donation program and other supportive measures. MPS1: MPS1 is a rare genetic disorder caused by the absence of an enzyme needed to break down glycosaminoglycans (GAG). The accumulation of GAG leads to severe damage to organs and tissues. Children often face severe health challenges and a limited lifespan. Early diagnosis and treatments like bone marrow or cord blood transplants can slow down many of the condition's devastating effects. Kennedy Ladd’s Journey: Kennedy Ladd was born on June 15th, 2014, in Knoxville, TN. Initially passing all newborn screenings, her condition manifested with a noticeable "hump" on her back at three months. Persistent advocacy by her parents led to a diagnosis of MPS1 (Hurler Syndrome) at Cincinnati Children’s Hospital on March 30, 2015. Kennedy underwent a successful Cord Blood Transplant on June 30, 2015, which has significantly improved her prognosis. The journey continues as Kennedy's younger brother, Lincoln, born on May 4th, 2017, was also diagnosed with the MPS1. To turn hope into action. We wish to use our journey through MPS1 as a vehicle of hope and light, all while we fight to find a CURE by 2025! So The Kennedy Ladd Foundation, Inc., a 501(c)3 non-profit organization, was created to FIGHT. Not just for Kennedy but for every child with MPS1. Because they envision a future where no parent has to watch their child suffer because of MPS1. Exciting Movement: As of July 1, 2017, MPS is included in Tennessee's newborn screenings, a milestone achievement that enables early diagnosis and treatment, offering hope to many families. Get Involved: There are many ways you can help us make a difference:
• Volunteer: Join our events and initiatives to provide hands-on support.
• Donate: Your contributions fund research, provide family support, and raise awareness.
• Partner: Collaborate with us to expand our reach and impact.
• Act: Share. Include- Believe everyone deserves a seat at the table. Stay Connected: Follow us on social media and stay updated on our latest news, events, and impact stories. Together, we can bring hope and support to families affected by MPS1 and other rare diseases. With Love, Kennedy's Parents, Ryan and Allie Ladd

8 years ago, Kennedy’s family sat in a hospital room that smelled like a can of cream corn.That’s the smell of stem cell...
10/14/2026

8 years ago, Kennedy’s family sat in a hospital room that smelled like a can of cream corn.

That’s the smell of stem cells going in on transplant day. Kayla remembers it well, along with everything else she felt that day:

“Scared for what was to come, after all the chemo. Hopeful for new cells and growth. Helpless, but covered in God’s peace.”

Today, life looks “somewhat normal.” Kennedy came through transplant with minimal complications. She still lives with daily orthopedic pain from kyphosis, a curve in the spine that’s common with MPS I. She hardly complains. Her mom says she’s simply used to it, and that chiropractic care has helped her.

That’s the part people don’t see. Transplant can change everything, and the hard parts still don’t go away.

When we asked what she’d tell a family just starting transplant, she said:

“Advocate. Fight. Lean on those who have walked through it. You’re not alone. One minute, one hour, one day at a time. Look at the blessings given, no matter how small.”

If your family is facing transplant right now, comment below or send us a message. Someone here has walked that road and will walk it with you. 💜

Your story matters. It takes a commUNITY.

Happy 8th Transplantiversary Hope For Kennedy Grace (MPS1)!!

For the first time ever, families facing Sanfilippo syndrome have a treatment.On September 17, the FDA approved a one-ti...
10/13/2026

For the first time ever, families facing Sanfilippo syndrome have a treatment.

On September 17, the FDA approved a one-time gene therapy for MPS IIIA, one of MPS I’s cousin diseases. Sanfilippo is often called childhood dementia. Kids develop normally, then slowly lose what they’ve learned. Until now, parents were told there was nothing to offer.

Let’s be honest about what it is and isn’t. It’s for children with Sanfilippo type A. It works best when given early, before major skills are lost. It’s not a cure, and it’s not a treatment for MPS I.

MPS I families are paying close attention anyway, because severe MPS I affects the brain too, and the treatment our kids receive today can’t reach it. This approval shows that protecting the brain in an MPS disease is possible.

We’re celebrating with every Sanfilippo family who fought for this day. Swipe through for the simple version, and share it with someone who’s been following MPS progress with us.

Better is possible. It takes a commUNITY.

Congratulations to Ultragenyx , the researchers, and every Sanfilippo family who made this possible.

💜 Cure Sanfilippo Foundation

10/12/2026

If we wait for a cure before we demand better, families lose years they can’t get back.

A cure is the goal. We will keep fighting for it. But MPS I families aren’t living in “someday.” They’re living in today, in hospital waiting rooms, school meetings, insurance calls, and long nights at home.

Better can start right now:
💜 A diagnosis that doesn’t take months of searching
💜 Doctors who already know what MPS I is
💜 Schools that understand what a child needs
💜 Parents who don’t have to fight every battle alone

None of that has to wait for a cure. That’s what Begging for Better means to us. We’re not ungrateful for progress. We just refuse to settle while families are still struggling.

So we want to hear from you: what does “better” look like for your family, or for someone you love? Tell us in the comments. Your answer might shape what we fight for next.

Better is possible. It takes a commUNITY.

10/09/2026

Your Thanksgiving tradition is missing something.

Every year, our commUNITY shows up in Rockwood on Thanksgiving morning. Some people run. Some walk. Some wobble. The kids race their hearts out and then everyone sits down for pancakes together.

These photos are some of my favorite memories. Every person in them chose to spend part of their holiday showing up for families living with MPS I.

Turkey Trot for A-Rare-Ness and Wobble for a Cure is back:
📍 Cofer's Garage , 141 S Front St, Rockwood
⏰ Thanksgiving morning, 8 AM
🏃 5K run/walk + 1-mile mini-trot
🥞 Pancake breakfast
💜 Presented by Griffith Family Pharmacy

Tag the people you want beside you at the start line. Registration link is in the comments.

It takes a commUNITY.

10/09/2026

Researchers need data but they also need to listen to the people living this disease.

Parents and caregivers of kids with MPS I track things no chart ever catches. How did she sleep? Is he taking the stairs differently this month? What did this week cost our family in pain, missed school and energy?

That's data too. It just rarely gets asked for.

When families help shape research, the questions get better. What counts as a "good outcome" starts to include what matters at the kitchen table, not just in the lab.

This isn't anti-research. We are deeply grateful for the doctors and scientists working on MPS. Research gets stronger when families are part of it from the start.

If you believe families deserve a seat at the table, share this.

Better is possible. It takes a commUNITY.

Today is DAF Day.If you've ever given through Fidelity Charitable, Schwab, Vanguard or your local community foundation, ...
10/08/2026

Today is DAF Day.

If you've ever given through Fidelity Charitable, Schwab, Vanguard or your local community foundation, you have a donor-advised fund. That's money you've already set aside to give away. Today, people all over the country are putting those dollars to work.

We'd love for some of that to reach MPS I families. Your grant sends iPads and care packages, creates Hope Hangouts, brings families together at the MPS I Family Summit, and puts their stories in front of lawmakers in Washington, D.C. Every gift moves us closer to ending the suffering of MPS I.

Give here and choose DAF at checkout: https://givebutter.com/curemps1
Giving from your provider's site instead? Search "The Kennedy Ladd Foundation," EIN 81-1387597.

Don't have a DAF? Share this post. Someone on your friends list probably does.

Better is possible. It takes a commUNITY. 💜

There is one sentence a rare-disease parent never forgets hearing.For Lauren, it came at Jude's 4-year well visit in Jun...
10/07/2026

There is one sentence a rare-disease parent never forgets hearing.

For Lauren, it came at Jude's 4-year well visit in June 2020. Their pediatrician gently stretched out Jude's arms, then his legs, and said: "I'm not saying there's something wrong but something isn't completely right here."

Until then, Jude had hit every milestone. He sat up, crawled, walked and talked right on time. He was the first grandbaby on both sides of the family, and to everyone who loved him, he was perfectly healthy.

What followed was two and a half years of specialists, blood work and no answers. Doctors tested him for juvenile arthritis again and again. Meanwhile his joints got stiffer, his hands and feet started to hurt, and he woke up at night in pain.

Lauren paused the testing and started searching on her own, late at night. Then her gut told her to go back to orthopedics. One X-ray of Jude's arms changed everything. On December 8, 2022, a few weeks before his 8th birthday, Jude was diagnosed with MPS I.

MPS I is a rare genetic disease. It keeps the body from breaking down certain complex sugars, so they build up in the joints, bones and organs over time. Jude was born in Tennessee in 2015 and wasn't screened for it as a newborn. His little brother, born five years later, was.

Lauren calls diagnosis day "the most painful relief I've ever felt." On the way home they stopped at Cracker Barrel, and Jude grinned at her across the table. "It was like we had reached the finish line," she said, "that just turned into a starting line."

His first infusion fell on Rare Disease Day. Today Jude is a stat-obsessed, basketball-playing farm kid who sings "Raise a Hallelujah" from the tractor. MPS I is part of his story. It doesn't define him.

Leave a 💜 for Jude, Lauren, and every family living the chapter they never expected. It takes a commUNITY.

Jude's Hallelujah Story

Most people have never heard of MPS I. Most families hadn't either — until the day a doctor said those letters out loud....
10/06/2026

Most people have never heard of MPS I. Most families hadn't either — until the day a doctor said those letters out loud.

That gap has consequences. When almost no one knows a disease exists, the early signs get missed. Ear infections that keep coming back. A hernia. Curved spine. Noisy breathing. A stuffy nose that never clears. On their own, each one looks like ordinary kid stuff. Together, they can point to something much bigger.

And with MPS I, time matters.

So here's the simple version:

MPS I is a rare genetic disease. A child's body can't make enough of one enzyme, so certain sugar molecules can't be broken down. They build up in cells all over the body — the heart, the airway, bones and joints, eyes, and in the most severe form, the brain.

There's no cure yet. Families rely on a stem cell transplant, weekly enzyme infusions, or both. These treatments help. They don't fix everything. That's why we keep Begging for Better.

Knowing what MPS I is won't cure it. But it can help a parent ask the right question sooner. It can help a teacher understand a student, or a friend know how to show up.

Save this post, and share it with one person who has never heard of MPS I. It takes a commUNITY. 💜

10/05/2026

Hope is not sitting around waiting for something to change.

When Kennedy was in the hospital, hope didn't come as a feeling. It came through people.
Everly Blu, a local boutique, sent me clothes so I could feel like myself in a place where nothing felt normal. A local family opened their home to us and kept bringing meals. A golf course manager looked at our situation and said, "We're doing a golf tournament." That tournament happened for 10 years! One day, a stranger bought me a cup of coffee. They had no idea what that small thing meant.
Not one of them could fix what we were facing. Every one of them gave us hope.

That's why our foundation is built on HOPE: Helping One Person Everyday. You don't have to do something big. You just have to do something.

So today, do one thing that creates hope for someone else. Then come back and tell us what you did. We want to cheer you on.

It takes a commUNITY.

Fall league champions.Lincoln’s rec league team won the championship this season. He wasn't the star. He was a kid on a ...
10/02/2026

Fall league champions.

Lincoln’s rec league team won the championship this season. He wasn't the star. He was a kid on a team, and for our family that's the win.

In 12 years of MPS I in our house, this may be the first time one of my kids got to do something and be just like everyone else.

Rare families, you know this part: it wasn't easy to stay quiet. Every instinct told me to speak up. Tell the coaches he has MPS I. Make sure he's protected. Make sure they know he might get tired faster than the other boys. Make sure they know he has a weak c-spine, could be hard to intubate in an emergency, and the list goes on. Advocating is how we've survived. Letting go of it, even for one season, was scary.

MPS I came up exactly once, when the coaches asked if Lincoln had ever caught. He hadn't. I told them he has a rare disease and a curve in his spine, and I wasn't sure his back could take the weight of the catching gear.

Every day with MPS I is not easy, and I won't pretend it is but there are still good days. Even the good days take work, and they're still worth celebrating.

This season was a smack in the face to MPS I. We are hear for it!

To his coaches, teammates and every family in those stands: thank you. It takes a commUNITY.

Rare families, what good day are you holding onto this week?

Tell us below. We want to cheer for you.

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Harriman, TN
37748

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