The Kennedy Ladd Foundation, Inc.

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 l

ives 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

04/08/2026
There’s a side of this life most people don’t see.appointments, tears, the quiet moments that stack up over time.and.......
04/08/2026

There’s a side of this life most people don’t see.

appointments, tears, the quiet moments that stack up over time.

and....We keep showing up.

Not because it’s easy but because our kids are worth everything.

MPS I families, we see you.

And we’ve created something just for you.

The Cure MPS 1 Family Summit is a place where families don’t have to explain their life… because we understand it.

👉 If you’re an MPS 1 family, we would love for you to join us.
Weekend of May 2nd
for Hope, CommUNITY, Fun, Family, and more.

We’re so grateful for families like Hope For Kennedy Grace (MPS1) who have trusted us with their story and allow us to walk alongside them.

Your strength, your love, and the way you keep showing up matters more than you know.

Run for A-Rare-Ness and Wiffle for a Cure
MPS I Family Summit

I’m a little late posting tonight… it’s been a full, beautiful, exhausting Easter over here 🤍But before the day ends, I ...
04/06/2026

I’m a little late posting tonight… it’s been a full, beautiful, exhausting Easter over here 🤍

But before the day ends, I didn’t want to miss saying this.

Happy Easter from our family to yours.

Today is a reminder of hope. Of redemption. Of new life. As an MPS 1 mom, I hold onto that a little tighter.

Because hope isn’t just a word for us… it’s what carries us through the hard days, the unknowns, and the fight we’re in for our kids.

Thank you for being part of this commUNITY.
Thank you for praying, giving, showing up, and loving our families so well.

We see you. We feel it. And it matters more than you know.

May your heart be full tonight… even if the day didn’t go perfectly. Even if you’re tired.
Even if you’re carrying something heavy.

Hope is still here.

With love,
Allie 💜
The Kennedy Ladd Foundation, Inc.

April is Autism Acceptance Month, and at The Kennedy Ladd Foundation, we want to honor every family walking this road.So...
04/02/2026

April is Autism Acceptance Month, and at The Kennedy Ladd Foundation, we want to honor every family walking this road.

Some of our families are living with both an autism diagnosis and MPS I. Others are navigating autism-like symptoms that can come with MPS I itself. Severe MPS I can affect the brain and development, and research shows children may experience developmental delay, changes in learning, and attention difficulties. Another published study found that in children with MPS IH, both the disease and treatment affected attention functions.

That is why acceptance matters so much.

Our kids deserve to be seen.
Our families deserve to be understood.
And no parent should have to explain over and over that their child’s needs are real, complex, and worthy of support.

This month, we stand with the autism commUNITY and with every family carrying both rare disease and neurodevelopmental challenges at the same time.

You are seen here.
You are welcome here.
And your child matters here. 💜

04/01/2026

These are the moments that matter, kids being kids, and a commUNITY showing up for one another.

We are so grateful to Sarah Elizabeth Photography. Your heart behind this event is felt in every detail, and it means more than you know.

As we head into Easter, we’re reminded of what hope truly looks like. New life, fresh starts, and the belief that better days are ahead.

While this was a fundraiser for The Kennedy Ladd Foundation, it’s also part of something bigger. Every event, every connection, every person who shows up helps us continue our mission to bring hope and work toward ending the suffering caused by MPS 1.

Thank you for being part of it.
📍 Field of Grace Farm

This is how you create awareness and how we can bring hope to families.We are so incredibly grateful to the UNC Muenzer ...
03/30/2026

This is how you create awareness and how we can bring hope to families.

We are so incredibly grateful to the UNC Muenzer MPS Center and North Carolina Tar Heels baseball for stepping up and creating something so special for our commUNITY.

📅 April 21, 2026
⚾️ MPS Awareness Day at the ballpark
📍 Boshamer Stadium

MPS families YOU are invited.

🎟 Complimentary tickets are available for MPS families
👉 Register here: https://tinyurl.com/UNCMPSBaseballGame

If you’re not an MPS family, you can still be part of this moment:
✔️ Share this post
✔️ Invite someone who should be there
✔️ Help us spread awareness so no family feels alone in this diagnosis

Because awareness leads to action. And action leads us closer to a cure.

If you’re reading this and wondering how you can help…

👉 COMMENT “HOPE” or send us a message.

Thank you again to Muenzer and Carolina Baseball for using your platform to shine a light on MPS. It matters more than you know.

💜

Yesterday was a lot.Not just exciting… emotional in a way that’s hard to put into words if you don’t live this life.The ...
03/26/2026

Yesterday was a lot.

Not just exciting… emotional in a way that’s hard to put into words if you don’t live this life.

The approval of a treatment for Hunter syndrome (MPS II) is something our friends and families have been waiting on for years.
When you’ve watched kids decline… sat in hospital rooms… held it together while your child is getting stuck over and over…you feel this one differently.

This is lives.
This is time.
This is families getting something they didn’t have yesterday.

This didn’t just happen. This happened because of TEAMwork.

Because parents refused to stay quiet.
Because families showed up again and again.
Because researchers kept going.
Because companies stayed in the fight.
Because advocates pushed when it was uncomfortable.

A small group… working together.

We are so grateful to Denali Therapeutics for continuing to push forward for these families, and to the organizations who stand in this fight every single day
Project Alive, The Kennedy Ladd Foundation, Inc., National MPS Society, Cure Sanfilippo Foundation

This is what happens when a commUNITY refuses to give up.
And while this approval is for MPS II… it matters for all of us.

As a mom to two kids with MPS-I Hurler Syndrome, I feel that deeply.

This shows treatments that reach the brain are possible. That work is moving.
It shows that there is still a path forward for our kids.

We talk a lot about HOPE… but I’m telling you, hope is real.
hope is a true medicine in this commUNITY. HOPE is Helping One Person Everyday.

Yesterday felt like hope got a little stronger.
But we are not done.

MPS III is next.

So we celebrate this moment, because it is BIG.

And then we get right back up and keep going. Today is a step, We're not done.

Historically, it's always been a small group of people that create a movement and drive change. Right now, that group is a handful of moms and dad fighting for our children's lives.

We still don’t have the perfect words… because the truth is, there are no perfect words for this.Love. Fear. Urgency. Re...
03/24/2026

We still don’t have the perfect words… because the truth is, there are no perfect words for this.

Love. Fear. Urgency. Reality.

And this is what people need to understand.
This is bigger than MPS1.

We stood in front of the U.S. Food and Drug Administration not because we are angry people but because we are parents who are out of time.

Thank you Senator Ron Johnson for being a louder voice and requesting an investigation.

03/22/2026

Sunday March 22nd…
📷

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Harriman, TN
37748

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The Kennedy Ladd Foundation, Inc. was created in honor of Kennedy Frances Ladd who was diagnosed with MPS1 (Hurler Syndrome) on March 30th, 2015. The Kennedy Ladd Foundation, Inc.: The Kennedy Ladd Foundation, Inc. raises awareness of MPS1 (Hurler Syndrome) by supporting research to cure MPS1 and other rare diseases. Fundraising is ongoing and includes an annual Play Fore Kennedy golf tournament held at the Oak Ridge Country Club. In 2017 The Kennedy Ladd Foundation, Inc. successfully obtained 501c3 status and supported The National MPS1 Society with a $13,000.00 donation. In addition to contributions to The National MPS Society, The Kennedy Ladd Foundation, Inc. seeks to ease the burden on families of kids coming into transplant and/or receiving weekly enzyme replacement therapies by providing inpatient or enzyme therapy children with iPADS. Children going through transplants and/or weekly enzyme replacement therapies are required to be in small confined spaces for long periods of time. We found the iPAD to be a perfect distraction for Kennedy during these times. **The Kennedy Ladd Foundation, Inc website is under construction but coming soon…. MPS1 (Hurler Syndrome): MPS1 (Hurler Syndrome) is a genetic disorder in which the body is missing an enzyme necessary to breakdown large molecules called glycosaminoglycans (GAG). As a result, the GAG molecules build up in the body and damage organs and tissues. MPS1 (Hurler Syndrome) occurs on average in about 1 out of every 100,000 babies born. Children with Hurler syndrome have many physical and mental problems. If the damage is not stopped, children born with Hurler syndrome usually die by 5 to 10 years of age. Through this journey we are blessed to have many people follow Kennedy’s progress, provide love and financial support, and show a genuine interest in helping to spread awareness for MPS1 (Hurler Syndrome). God and our supporters have given us the strength to be loud advocates for MPS1 (Hurler Syndrome) Kennedy Frances Ladd’s journey: Kennedy Frances Ladd was born on June 15th, 2014 in Knoxville, TN. She was pronounced a healthy baby girl and passed all of her newborn screenings. Kennedy grew and passed milestones. At 3 months, we noticed a “hump” on her back. The pediatrician told us not to worry, “her muscles haven’t fully developed.” We continued to press for answers and finally just short of 9 months old, Kennedy was sent to East Tennessee Children’s Hospital (ETCH) for an MRI and Ultrasound. The doctors at ETCH ruled out the mass was cancer. They told us the mass was a kyphosis and perhaps an indicator for MPS. The next week we were at Cincinnati Children’s Hospital for genetic testing and on March 30, 2015 it was confirmed Kennedy had MPS1 (Hurler Syndrome) **We are very excited that as of July 1, 2017 MPS is on Tennessee newborn screenings! This is exciting news for early diagnosis and treatment** Successful bone marrow transplants or cord blood transplants in children with Hurler stop many of the devastating effects of Hurler. We are happy to say Kennedy Ladd received a successful Cord Blood Transplant from an unrelated donor on June 30, 2015! Kennedy now has a brother, Lincoln, born May 4th, 2017 with the same condition. Please help us. There are so many way to help!

Stop by your local Y-12 Federal Credit Union and ask them to deposit into The Kennedy Ladd Foundation, Inc account.

Donate through PayPal https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=X7T788R8J6GBU KFrances Clothing (www.kfrances.net). A portion of all sales from KFrances Clothing are donated to The Kennedy Ladd Foundation, Inc. BeTheMatch.org (www.bethematch.org ). Provides information for those who wish to become bone marrow donors.

Create a Facebook Fundraiser for The Kennedy Ladd Foundation, Inc. It’s simple, free, reaches a magnitude of people and the foundation gets 100% of proceeds.