Cockayne Syndrome Foundation

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Cockayne Syndrome Foundation

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Cockayne Syndrome Foundation, Nonprofit Organization, Cockayne Syndrome Foundation, Long Valley, NJ.

We are an all volunteer 501(c)(3) nonprofit tax-exempt organization committed to improving the lives of families affected by CS and TTD through support, education, and research.

09/01/2026

Grief doesn’t follow a timeline.

For families living with Cockayne Syndrome and Trichothiodystrophy, grief can begin long before a loss and after a loss, it can continue to come in waves.

Some days, the waves may feel overwhelming. Other days, they may be quiet enough to breathe. There may be moments of laughter, memories that bring comfort, and days when the ache feels impossible to carry.

All of it is grief.
All of it is love.

To every CS and TTD family walking through grief: you are not alone. Your loved one mattered. Their life mattered. And the love you carry for them will always have a place here. 🤍

We are holding space for you.. for the loud waves, the quiet moments, and everything in between.

https://www.cockaynesyndromefoundation.org/get-involved

08/28/2026

If you’re here, you’re already part of our community. 💙

Maybe you found us through a post about Cockayne Syndrome.
Maybe you’ve learned something new about Trichothiodystrophy.
Maybe a story about one of our children touched your heart.
Or maybe you simply stopped by because you wanted to learn more.

Whatever brought you here, we’re so glad you’re here.

But here’s one small thing you can do that makes a BIG difference:

Follow the Cockayne Syndrome Foundation.

When you follow, you help us reach more families, educate more people, spread awareness for Cockayne Syndrome and Trichothiodystrophy, and make sure these rare conditions are seen and understood.

You never know who might be searching for answers and find our page because you chose to follow and share our mission.

So if you’ve been following along without hitting that button yet…
this is your sign. 💙

Follow. Share. Learn. Advocate.

Together, we can make sure rare doesn’t mean forgotten. 💙

08/27/2026

These conditions are not caused by anything parents did or didn’t do.

One of the first questions many parents ask after receiving a diagnosis is:

“Did I do something wrong?”

The answer is no.

Cockayne Syndrome (CS) and Trichothiodystrophy (TTD) are genetic conditions. They are caused by changes in specific genes that are inherited, not by anything a parent ate, drank, did, or didn’t do during pregnancy or after birth.

Most parents are healthy carriers and have no idea they carry a gene change until their child is diagnosed.

A diagnosis can bring feelings of guilt, fear, and countless unanswered questions. But one thing every family deserves to hear is this:

You did not cause your child’s condition.

What your child needs most is exactly what you’ve been giving all along!!!! Your love, your advocacy, and your unwavering support.

💙 To every CS and TTD parent: You are not to blame, and you are not alone.

08/26/2026

🐾💙 National Dog Day 💙🐾

Today we’re celebrating some of the most loyal, comforting, and unconditional members of our families our dogs!!!

For many children living with Cockayne syndrome and Trichothiodystrophy, a furry best friend is so much more than a pet. They’re a source of comfort during difficult days, a reason to smile through hospital visits, a cuddle buddy during sleepless nights, and a faithful companion through every challenge.

We’d love to celebrate the special bond between our warriors and their four-legged friends!

📸 Share your favorite photo of your child with their dog (or any beloved pet) in the comments or send it to us to celebrate the love, joy, and comfort our furry family members bring.

Because sometimes the biggest hearts come with four paws. 🐾❤️

08/25/2026

Before There Was a Diagnosis, There Was a Child. 💙

Before the appointments.

Before the testing.

Before the uncertainty.

Before the words “Cockayne Syndrome” or “Trichothiodystrophy.”

There was a child.

A child with a beautiful smile.

A curious mind.

A favorite toy.

A contagious laugh.

A personality all their own.

A diagnosis can help explain the challenges a child faces, but it should never become the only thing people see.

Every child is so much more than their medical chart.

They are sons and daughters.

Brothers and sisters.

Classmates and friends.

Dreamers, adventurers, artists, athletes, and world changers.

At the Cockayne Syndrome Foundation, we believe awareness begins by seeing the child first.. not the diagnosis.

Because every child deserves to be known for who they are, not just the condition they live with.

💙 Every child has a story.
💙 Every child has purpose.
💙 Every child deserves to be seen.

https://www.cockaynesyndromefoundation.org/get-involved

08/20/2026

💙 Thursday Thought: Hope

Hope is not pretending the journey is easy. Hope is choosing to believe that every moment, every life, and every story has purpose.

For families living with Cockayne Syndrome and Trichothiodystrophy, hope looks like celebrating milestones, finding joy in the little moments, supporting one another, and continuing to fight for a brighter future.

Every warrior matters. Every family matters.

https://www.cockaynesyndromefoundation.org/living-with-cs

08/19/2026

Warrior Wednesday: Meet Harper 💙

Today we’re celebrating a very special warrior—Harper! ✨

Harper is 10 years old and was diagnosed with Cockayne Syndrome in December 2021. But before anything else, Harper is a daughter, a friend, a joy-bringer, and a light to everyone lucky enough to meet her.

Harper is a true bundle of joy. She has a way of brightening every room she walks into, and she never meets a stranger. Somehow, she always seems to know when someone needs a hug, a smile, or a little extra love.

She is independent, determined, and a true go-getter. Harper loves Stitch, Elsa, animals of all kinds, and the color blue. She enjoys playing baseball and putting puzzles together—always challenging herself and showing the world just how strong and capable she is.

One thing about Harper… once you meet her, you never forget her. Her gentle spirit, kindness, and joyful personality leave a mark on everyone around her.

Harper, you are so much more than a diagnosis. You are loved, valued, and a beautiful reminder that every life is precious.

Help us celebrate Harper today! Leave her some love in the comments and remind her that her CS family is cheering her on. 💙✨

https://www.cockaynesyndromefoundation.org/post/get-to-know-harper

08/17/2026

❄️🍂 Meet THE MARINI FAMILY: A Story of Courage, Love & Hope 💙

As we prepare for our Winter Ball in the Fall, we are honored to share the stories of the incredible families who inspire our mission every day.

Meet the Marini Family. A family whose journey reminds us that courage is not the absence of hard things—it is choosing love, hope, and joy through them all.

The Marinis have called Long Valley home for 19 years and are blessed with three children. Their two oldest children, Lucas and Lara, both live with Cockayne Syndrome (CS)—a rare genetic condition that affects DNA repair and brings many challenges along their journey.

But this family knows that a diagnosis does not define a person.

Lucas and Lara are so much more than CS. They are children who are deeply loved, celebrated, and surrounded by a family who chooses to embrace every moment, every milestone, and every adventure.

Cockayne Syndrome Foundation exists because families like the Marinis remind us why this mission matters:
💙 To support families
💙 To raise awareness
💙 To advance research
💙 To bring hope to those walking this rare journey

This year’s Winter Ball in the Fall is more than an event. It is an opportunity to stand beside families, honor the warriors who continue to fight, remember those whose journeys have ended too soon, and help create a future with more answers and more hope.

Your sponsorship and donations make a lasting impact.

💙 Become a sponsor and help us continue this mission:
Winter Ball in the Fall 2026 Sponsorship Form⁠:
https://forms.cloud.microsoft/pages/responsepage.aspx?id=NUnCzqCbsEOSbzNfQMx89ymelw5G5N5Ch9zljs7o-8FUMFoyTFlRVFBJVE5POUxTNEQ4T1dJWktHOS4u&origin=QRCode&qrcodeorigin=presentation&route=shorturl

💙 Make a donation and help bring hope to CS/TTD families:
Winter Ball in the Fall 2026 Donation Form⁠:
https://givebutter.com/winterballinthefall2026

Every family. Every warrior. Every story matters. 💙

08/14/2026

There are no words that can make this make sense, no words that can ease the pain of a family losing their child. Everyday, somewhere across the world someone in our community is grieving, sometimes all we can do is hold them close, say their name and know we will always be there to walk with you.

08/13/2026

There are no words that can make this make sense, no words that can ease the pain of a family losing their child. Everyday, somewhere across the world, someone in our community is grieving. Sometimes all we can do is hold them close, say their name and know we will always be there to walk with you.

Address

Cockayne Syndrome Foundation
Long Valley, NJ
07853

Telephone

+15185788683

Website

http://cockaynesyndromefoundation.org/

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