Cockayne Syndrome Foundation

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Cockayne Syndrome Foundation

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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.

10/15/2026

Finding Community in CS/TTD!

When your child is diagnosed with a rare disease like Cockayne syndrome or Trichothiodystrophy, it can feel like you're navigating a world that few people understand.
The appointments, the uncertainty, the medical challenges, and the emotions that come with the journey can sometimes feel incredibly isolating.

But there is something powerful about finding another family who understands. Someone who doesn't need every detail explained. Someone who understands the victories, the difficult days, and the love that carries you through it all.

Community reminds us that we are not alone. It creates space to share resources, celebrate our children, honor those we've lost, and support families at every stage of their journey.

Whether you are newly diagnosed, have been navigating this journey for years, or are remembering a child you love, there is a place for you in this community.

If you're part of the CS/TTD community, what has helped you feel less alone? And if you're still searching for your community, what kind of support do you wish you had?
Let's continue connecting families, sharing stories, and making sure no one feels invisible.

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

10/14/2026

Wednesday Warriors: Ryan & Matthew Spagnoletti

Today, we honor Ryan and Matthew, two beautiful brothers from Cape Town, South Africa, who showed incredible strength while living with Cockayne syndrome.

Ryan was a happy, mischievous little boy who loved sports, riding his bike and especially horseback riding. With his wise soul and big personality, he was always the center of attention at school. Ryan passed away at just 9 years old on July 10, 2012.

Matthew was a gentle, loving little boy whose hugs could reach your soul. He loved his family, his horse, riding his bike and making everyone around him feel special. Matthew passed away at just 7 years old on September 2, 2014.

Though their lives were far too short, Ryan and Matthew filled the world with love, laughter and unforgettable memories. Their strength and beautiful spirits will never be forgotten.

Two brothers. Two warriors. One everlasting legacy. 🕊️

https://www.cockaynesyndromefoundation.org/post/the-spagnoletti-brothers

10/13/2026

Our bodies are made up of trillions of cells, and inside nearly every cell is DNA, the instruction manual that helps our bodies grow, develop, and function.

A genetic mutation, also called a genetic variant, is a change in the DNA sequence. Some changes have no known effect, while others can disrupt how a gene works and contribute to a genetic condition.

In rare diseases like Cockayne syndrome (CS) and Trichothiodystrophy (TTD), changes in certain genes can affect important cellular processes, including DNA repair and gene activity. These disruptions can have wide-ranging effects on the body and may look different from one individual to another.

Behind every genetic diagnosis is a person, a family, and a story. Understanding the science helps us raise awareness, support research, and bring hope to families navigating rare diseases.

🧬 The more we understand genetics, the more we can learn about the conditions that affect so many lives.

https://www.cockaynesyndromefoundation.org/family-resources

10/10/2026

Sometimes, the simplest things can make the biggest difference. A hug, a listening ear, a kind word, or simply asking, “How are you really doing?” can remind someone that they aren’t alone.

For families navigating Cockayne syndrome (CS) and Trichothiodystrophy (TTD), the journey can bring overwhelming emotions, uncertainty, exhaustion, and days when the weight of it all feels heavy.

Behind every medical appointment, therapy session, and act of advocacy is a person who may need support, too.

💚 It’s okay to feel overwhelmed.
💚 It’s okay to ask for help.
💚 It’s okay to have hard days.
💚 It’s okay to prioritize your mental health.
💚 You don’t have to carry everything alone.

Sometimes, a hug is a beautiful place to start, but it’s also okay to need more support.

If you or someone in your family is struggling emotionally, consider reaching out to a licensed mental health professional, counselor, or therapist. Support groups and other rare-disease families can also offer understanding and connection. You can ask your healthcare provider for referrals or look for a therapist experienced in chronic illness, medical trauma, grief, or caregiver stress. We are here for every CS/TTD family member!!

If you’re in the United States and need immediate emotional support, you can call or text 988 to reach the Su***de & Crisis Lifeline. You do not have to be suicidal to reach out.

💚 Check on your friends. Hug your loved ones. Give yourself grace. And remember that seeking help is a sign of strength, not weakness.

No family should have to navigate this journey alone.

10/08/2026

🧬 PART TWO 🧬

Behind every rare genetic condition is a story written within our DNA. For families affected by Cockayne syndrome (CS) and Trichothiodystrophy (TTD), understanding the genes involved is an important part of understanding the conditions their loved ones face.

Cockayne syndrome is linked to two genes:
ERCC8 on chromosome 5 and ERCC6 on chromosome 10. These genes help our cells repair damaged DNA and keep important cellular processes working. When these genes have disease-causing changes, the body's ability to repair DNA is disrupted, contributing to the complex challenges associated with Cockayne syndrome.

Trichothiodystrophy is also connected to genes involved in DNA repair and other essential cellular functions.
Depending on the genetic cause, these can include ERCC2 on chromosome 19, ERCC3 on chromosome 2 and GTF2H5 on chromosome 6, among others.

While these conditions can share genetic pathways and some clinical features, each has its own unique challenges, and every individual's journey is different.

10/07/2026

🧬 PART ONE OF OUR TWO PART SERIES 🧬

Behind every rare genetic condition is a story written within our DNA. For families affected by Cockayne syndrome (CS) and Trichothiodystrophy (TTD), understanding the genes involved is an important part of understanding the conditions their loved ones face.

Cockayne syndrome is linked to two genes:
ERCC8 on chromosome 5 and ERCC6 on chromosome 10. These genes help our cells repair damaged DNA and keep important cellular processes working. When these genes have disease-causing changes, the body's ability to repair DNA is disrupted, contributing to the complex challenges associated with Cockayne syndrome.

Trichothiodystrophy is also connected to genes involved in DNA repair and other essential cellular functions.
Depending on the genetic cause, these can include ERCC2 on chromosome 19, ERCC3 on chromosome 2 and GTF2H5 on chromosome 6, among others.

While these conditions can share genetic pathways and some clinical features, each has its own unique challenges, and every individual's journey is different.

10/06/2026

Supporting special needs parents doesn’t always mean watching their child.

For many families, leaving their child with someone else isn’t simple. Medical needs, equipment, medications, routines, and the comfort of having a trusted caregiver nearby can make traditional babysitting difficult.

But there are so many other ways to show up.

Bring dinner. Fold a load of laundry. Pick up prescriptions. Help with errands. Sit and listen. Offer encouragement. Remember the parent behind the caregiving.

Sometimes, the most meaningful support isn’t taking a child out of their parent’s hands. It’s helping make the life they’re living a little lighter.

Ask how you can help, listen to what the family needs, and show up in ways that work for them.

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

10/02/2026

Winter Ball in the Fall would not have been possible without the generosity, kindness, and love of the people and businesses who believe in our mission. Every donation, sponsorship, and act of support helps us create meaningful moments for families affected by Cockayne Syndrome and Trichothiodystrophy.

A very special THANK YOU to K & M Contracting for being our Ruby Sponsor! Your generosity and willingness to stand alongside our families mean more than words can express.

To all of our Partners in Hope, thank you for seeing the importance of this mission and for helping us turn an evening of celebration into something that will make a lasting difference. Your support helps the Cockayne Syndrome Foundation continue its work in family support, awareness, research, and hope for the future.

Behind every sponsorship is a heart that chose to care, a business that chose to give, and a community that chose to come together for families facing extraordinary challenges.

Because of you, we were able to create memories, celebrate beautiful lives, and remind these families that they are never alone.

You are more than donors. You are part of our village, our mission, and our hope for the future.

From the bottom of our hearts, thank you for being part of Winter Ball in the Fall.

10/01/2026

Winter Ball in the Fall
More Than Just a Celebration.

A room full of love, families who understand one another in ways words could never fully explain, and moments that we will hold in our hearts forever.

Winter Ball in the Fall was about celebrating life, embracing the beautiful moments we have today, and creating memories that will last a lifetime. It was a reminder that even in the midst of the hardest journeys, there is still so much beauty, joy, love, and hope to be found.

To every family who joined us, every person who donated, every volunteer, and everyone who helped make this night possible, thank you for being part of something so much bigger than one evening. You helped create a space where families affected by Cockayne Syndrome and Trichothiodystrophy could come together, feel understood, make memories, and celebrate their beautiful children.

Every donation made will help Cockayne Syndrome Foundation continue its mission to support families, advance research, raise awareness, and provide resources for those navigating these rare and life-limiting conditions. Every dollar is an investment in families, in hope, and in a future with more answers and possibilities.

As you watch these moments, we hope you see more than pictures. We hope you see the love between these families, the strength behind their smiles, the beauty in their children, and the importance of making every moment count.

Because every life deserves to be celebrated, every family deserves support, and every moment is worth making beautiful.

Thank you for making Winter Ball in the Fall a night we will never forget. 🩵🤍

09/30/2026

Some moments are simply too beautiful for words.

For Lara’s 16th birthday, her mother, Mrs. Amy, made a decision that turned a cherished memory into something truly unforgettable. She took the wedding dress she wore in 2005 and had it altered to fit her daughter, so Lara could wear it for a milestone of her own.

At Winter Ball in the Fall, Lara wore her mother's wedding dress, carrying with her not only a beautiful piece of her mother's history, but also a lifetime of love stitched into every detail.

For families living with Cockayne Syndrome and Trichothiodystrophy, milestones can look a little different, and the future can hold many unknowns. But one thing remains certain: the beauty of today is worth celebrating.

Winter Ball in the Fall is about just that. Celebrating our children, embracing the beautiful moments we are given, finding joy in the unexpected, and making the most of every opportunity to create memories that will last a lifetime.

Amy and Lara remind us that sometimes the most meaningful gifts aren't brand new. Sometimes they're filled with years of love, treasured memories, and the hope of making new ones.

A mother's wedding dress. A daughter's 16th birthday. A moment that will forever be woven into their story.
Here's to celebrating life, cherishing every milestone, and finding extraordinary beauty in the moments we share. ✨

Address

Cockayne Syndrome Foundation
Long Valley, NJ
07853

Telephone

+15185788683

Website

http://cockaynesyndromefoundation.org/

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