Cockayne Syndrome Foundation

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 commited to improving the lives of families affected by CS and TTD through supper, education, and research.

06/01/2026

Behind every child with CS or TTD is a parent who loves fiercely, advocates tirelessly, and never gives up.

To all the parents and caregivers in our community: thank you for the countless sacrifices, the quiet acts of courage, and the unconditional love you give every day.

We see you. We appreciate you. We celebrate you.

💚🩵 Happy Global Parents Day 🩵💚

One year ago today, our extended family shared their story with Special Books by Special Kids to help bring awareness to...
05/29/2026

One year ago today, our extended family shared their story with Special Books by Special Kids to help bring awareness to Cockayne Syndrome.

In the interview, Mr. Lucas and Miss. Lara share what life looks like living with Cockayne Syndrome and the challenges that come with such a rare diagnosis. When rare hits, the Marini family puts their own lives on hold to make sure other families, like ours, have support, resources, and hope.

To watch the video:
https://youtu.be/BcFhJ0Vpqhg?si=IL1ClYCE3eElA3WM 

To learn more about Cockayne Syndrome and the work being done: https://www.cockaynesyndromefoundation.org/about-cs-ttd

Some days progress looks different than people expect.A smile. A good appointment. A calm day. A moment without pain.We ...
05/28/2026

Some days progress looks different than people expect.
A smile. A good appointment. A calm day. A moment without pain.
We celebrate every win — big or small. 💚🩵

What’s one small win your family had this week?

05/27/2026

In Ljubljana, families, researchers, doctors, and therapists from around the world came together for an international study on Cockayne syndrome type B.

Using advanced technology and movement-based assessments, researchers collected critical data to help prepare for future gene therapy clinical trials. Every family’s participation brings us one step closer to understanding this devastating disease and moving toward the hope of a first treatment for children with CSB!!!

Thank you, Cure for Children with Cockayne syndrome - type B., Viljem Julijan Association working with Karolina parents on making this happen and Portuguese research team from Algarve Biomedical Research Institute.

Together, we are building hope for a brighter future!!

05/25/2026

From all of us at the Cockayne Syndrome Foundation, we honor the brave heroes who served our country and remember those who made the ultimate sacrifice. We are grateful today and every day. 🇺🇸

A couple days ago, we shared the very first time Maggie & Lara met. Today, we’re excited to share that Lara will be runn...
05/25/2026

A couple days ago, we shared the very first time Maggie & Lara met. Today, we’re excited to share that Lara will be running alongside Maggie! 🩵💚

This weekend, Maggie with Run Free is running across New Jersey to help raise money for the Cockayne Syndrome Foundation.

Cockayne Syndrome Foundation (CSF) is dedicated to enhancing the quality of life for children and families affected by Cockayne Syndrome (CS) and Trichothiodystrophy (TTD). Through community support, advocacy, education, and awareness, CSF helps caregivers, healthcare providers, and communities better understand these rare disorders.

While there is currently no cure for CS or TTD, the foundation continues to support research partnerships aimed at developing better treatments, and one day, a cure. You can help that goal by giving to CSF.
https://www.cockaynesyndromefoundation.org/event-details/run-free

We are so thankful for all the support, donating, and helping spread awareness for these incredible children and families.

05/24/2026

A couple of our kiddos recently were sent some sweet kicks so they can play all day!!

Finding shoes that fit our kids' braces can be VERY tricky. Some insurances will cover ONE pair of shoes to go along with the braces, other insurances cover nothing but the braces (we are all VERY grateful). Just one pair is covered, then we cross our fingers and hope the shoes last as long as the braces do.

Buuuuut, fear not, my CS and TTD Moms and Dads! We got you covered!! Check out this sneakers we sent to our buddies!! Even that kitten approves!

❤️❤️
05/23/2026

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Address

Cockayne Syndrome Foundation
Long Valley, NJ
07853

Telephone

+15185788683

Website

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