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

Behind the scenes of our logo 🩵The butterfly symbolizes transformation, hope, and the resilience of the children and fam...
06/24/2026

Behind the scenes of our logo 🩵

The butterfly symbolizes transformation, hope, and the resilience of the children and families in our community.

June is Cockayne Syndrome Awareness Month in Pennsylvania, and we’re honored to join in spreading awareness for our rare...
06/22/2026

June is Cockayne Syndrome Awareness Month in Pennsylvania, and we’re honored to join in spreading awareness for our rare disease community.

Cockayne Syndrome (CS) impacts approximately 2 in 1 million children. Because of its rarity, many individuals are initially misdiagnosed with conditions such as Failure to Thrive, Cerebral Palsy, or Microcephaly. While our children may share symptoms with these diagnoses, many of the challenges they face cannot be seen from the outside.

Trichothiodystrophy (TTD) is even rarer, affecting approximately 1 in 1 million children. Over the years, TTD has been known by many names, including Amish Brittle Hair Disease, Tay Syndrome, Pollitt Syndrome, Sabinas Syndrome, BIDS, PIBIDS, and IBIDS.

Rare diseases may be uncommon, but the families living with them are not alone.

We are the voice for the rare.
We are the door openers when families are told “no” too many times.
We are the advocates, the fighters, and the hope for a brighter future.

This month, help us raise awareness, support research, and stand beside the rare disease community as we fight for better treatments, greater understanding, and a better future for every child and family affected.

Together, we can make a difference.

https://www.cockaynesyndromefoundation.org/about-cs-ttd

06/21/2026

Today, we celebrate the incredible fathers in our
CS/TTD community.

The dads who work long hours while carrying the weight of medical uncertainty. The dads who sit through appointments, hospital stays, therapies, and sleepless nights. The dads who advocate fiercely, love unconditionally, and never stop showing up for their children.

Being a medical dad requires a strength that often goes unseen. Through every challenge, you continue to support your family, create joyful moments, and remind your children that they are deeply loved.

Today, and every day, we honor your sacrifices, your resilience, and your unwavering dedication.

To the fathers holding their children close and to the fathers carrying cherished memories in their hearts, we celebrate you.
Happy Father's Day.

🎓✨ Meet our little Ronin! ✨🎓Today we are celebrating Ronin and his incredible parents for reaching a huge milestone. Ron...
06/19/2026

🎓✨ Meet our little Ronin! ✨🎓

Today we are celebrating Ronin and his incredible parents for reaching a huge milestone. Ronin graduated kindergarten!

Filled with life, love, courage, and determination, Ronin continues to inspire everyone around him. His bright spirit reminds us why we work so hard to create a better future for children and families affected by CS/TTD.

Every achievement, big or small, is worth celebrating, and today we are so proud of all that Ronin has accomplished. Congratulations, Ronin! We can’t wait to see all the amazing things you’ll do next.

Advocacy opens doors.Whether it's access to therapies, educational support, accommodations, communication tools, or incl...
06/18/2026

Advocacy opens doors.

Whether it's access to therapies, educational support, accommodations, communication tools, or inclusive opportunities, every child deserves the resources they need to thrive.

For families affected by Cockayne Syndrome and Trichothiodystrophy, advocacy often becomes part of everyday life.

Parents, caregivers, educators, and healthcare professionals work together to ensure each child has the support they deserve.

This Learning Disability Week, we honor the advocates who help make a difference and the warriors who inspire us every day. Together, we can create a more inclusive future for all!!!

💚🩵 Learning Disability Week 🩵💚Learning is not one-size-fits-all.For many children living with TTD/CS, learning may happe...
06/17/2026

💚🩵 Learning Disability Week 🩵💚

Learning is not one-size-fits-all.

For many children living with TTD/CS, learning may happen at a different pace or in different ways than their peers. Success isn’t always measured by grades, test scores, or traditional milestones.

Sometimes success is learning a new skill, communicating a need, mastering a daily task, or simply continuing to persevere through challenges.

This Learning Disability Week, we celebrate every step forward, big or small!!!!!!!!

Every child deserves the opportunity to learn, grow, and be recognized for their unique strengths.

Today, we pause to honor the beautiful children whose lives were touched by Cockayne Syndrome/Trichothiodystrophy and wh...
06/17/2026

Today, we pause to honor the beautiful children whose lives were touched by Cockayne Syndrome/Trichothiodystrophy and who are no longer with us.

Though their time here was far too short, their impact remains immeasurable. They taught us resilience, courage, unconditional love, and the importance of cherishing every moment. Their stories continue to inspire our community, guide our mission, and fuel our determination to create a better future for families affected by CS and TTD.

To the parents, siblings, grandparents, and loved ones carrying the weight of loss, you are not alone. Your children are forever a part of our foundation family. Their names, their smiles, and their legacies will always be remembered.

If you are navigating grief, support is available:

• The Compassionate Friends⁠ – Peer support for families after the death of a child, with chapters and online resources worldwide.

• Bereaved Parents USA⁠ – Support and community for grieving parents and families.

• Child Bereavement UK⁠ – Resources and support for families and professionals.

• The Dougy Center⁠ – Grief resources for children, teens, young adults, and families.

• Grief Encounter⁠ – Support for bereaved children and families.

• What's Your Grief⁠ – Free educational grief resources, articles, and community support.

🩵 No matter where you are in the world, there is a community ready to walk beside you. 💚

Children with learning disabilities are so much more than their diagnosis.They are explorers, problem-solvers, dreamers,...
06/16/2026

Children with learning disabilities are so much more than their diagnosis.

They are explorers, problem-solvers, dreamers, siblings, friends, and warriors.
Too often, the world focuses on what children cannot do. This week, we challenge ourselves to focus on what they can do.

When we celebrate strengths, provide support, and create inclusive opportunities, children are empowered to reach their fullest potential.

Let's continue building a world where every child is valued, included, and given the chance to shine.

What is one strength that makes your warrior special?
Share below!

Meet Lara, one of our amazing 8th-grade graduates! 🎓✨From cheerleading to keeping life full of color and joy, Lara conti...
06/15/2026

Meet Lara, one of our amazing 8th-grade graduates! 🎓✨

From cheerleading to keeping life full of color and joy, Lara continues to do incredible things. Her determination, spirit, and bright personality inspire everyone around her.

We are so proud of all she has accomplished and grateful for the impact she has on our community. Lara is helping us shape a brighter future for Cockayne Syndrome Foundation, and we can’t wait to see all the amazing things ahead for her.

Congratulations, Lara! We’re cheering you on every step of the way! 💙💛

When a community comes together, amazing things happen. Thank you, Linda Eckert, for choosing to support the National In...
06/12/2026

When a community comes together, amazing things happen. Thank you, Linda Eckert, for choosing to support the National Initiative for Cockayne Syndrome/ Cockayne Syndrome Foundation!! We are so grateful for your dedication, kindness, and belief in our mission. Thank you to everyone who donated and participated. Your support means more than words can express.

Address

Cockayne Syndrome Foundation
Long Valley, NJ
07853

Telephone

+15185788683

Website

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