Share & Care Cockayne Syndrome & Trichothiodystrophy Network

06/17/2026

Greetings, We are collaborating to develop a guidebook focused on Cockayne Syndrome (CS). If you have a child with solely the ERCC8 variant (without any overlaps with TTD or XP), we would like to invite you to contribute a photo for this initiative. We have already received numerous submissions from families with the ERCC6 variant. If you wish to participate, please send the signed consent form along with a photo of your child and a quote that reflects something special about them, which could be comforting for families who are newly diagnosed. Please note that names will not be included in the book; it will solely feature photos and quotes about both adults and children with CS. You can find the consent form here: https://drive.google.com/file/d/1OrVY9xaPXE15L0TZ9rs8btdk1UNeRq6V/view?usp=sharing

To summarize: Please send the consent form to: [email protected], include your email address, a quote, and attach one or two photos of your child/young adult with CS - ERCC8 variant (with no other variations or overlapping conditions)

Thank you!

06/17/2026

We are incredibly grateful to Morning Star Catholic School for selecting Share and Care Cockayne Syndrome Network as the recipient of their student dress down day fundraiser.
A very special thank you to Amelia for nominating our nonprofit. We were blessed to know her daughter, Sasha, and cherish the memories of their family attending our conferences over the years. Although Sasha passed away, her legacy continues to inspire hope and kindness in our community.
Support like this means so much. Donations help us provide resources and connection for families who are newly navigating the journey of Cockayne syndrome and related rare DNA repair disorders, while also advancing research that brings hope for the future.
Thank you to the students, faculty, and families of Morning Star Catholic School for turning compassion into action. 💛🦋

06/09/2026

We have some great artists in our group. I hope that somebody will submit and make it into this contest. Maybe we can work on something together at the conference we’d love to hear your ideas!

🎨 Share your story. Advocate through art.

The 2026 Rare Artist Contest, powered by the EveryLife Foundation for Rare Diseases, is now open! 10 awardees will have their work showcased at Rare Disease Week on Capitol Hill in 2027, receive a cash prize, and more.

Categories include 2D Art, 3D Art, Digital Art & Photography, Poetry, Music, and Short Video.

Learn more and enter by July 20: RareArtist.org

06/09/2026

This is an exciting moment for the Cockayne syndrome community. Congratulations to everyone involved in reaching this important milestone.

Progress in rare disease research takes years of dedication from families, researchers, clinicians, donors, and advocates. We are grateful for every effort that moves the field forward and look forward to following future developments. 💛

Today, we are sharing news we once thought impossible.

Riaan has become the first patient ever treated with an experimental AAV9 gene therapy for Cockayne syndrome, delivered through an intracerebroventricular (ICV) procedure.

Cockayne syndrome was first identified in 1936. 90 years later, our community has reached this extraordinary milestone. It belongs not only to Riaan, but to every child and family affected by this devastating disease.

When Riaan was diagnosed, we, as his parents and founders of this organization, were told there was no cure and that nothing could be done. We refused to accept that answer. Instead, we assembled a team of scientists, clinicians, partners, donors, and advocates who understood that our children cannot wait. They moved with the urgency, humility, and collaboration that this moment required.

While it is still early and we do not yet know the full impact of this treatment, Riaan remains clinically stable and is doing well seven weeks after dosing.

This achievement belongs to every member of the RRI team, our scientific and clinical partners, our supporters, anyone who has ever shared our social media posts and raised awareness, and the entire Cockayne syndrome community.

This moment belongs to those who dare to dream. Most of all, it is a testament to the extraordinary power of our beautiful children who can move mountains.

Our work is far from over. We hope to be able to treat additional children with CSA/ERCC8 mutations, pending regulatory approvals and funding.

Today, we invite you to read our announcement and celebrate this major advancement for the Cockayne syndrome community. Thank you to everyone who believed in Riaan and walked this path with us.

Read our press release here and share widely!: https://riaanresearch.org/press-release-2026/

06/09/2026

🚨 It's Not Too Late to Join Us in Minneapolis! 🚨

Yesterday we shared that a few openings have become available for the 2026 Share & Care Family Conference, and we wanted to make sure families didn't miss this opportunity.

For many parents, attending their first Share & Care conference is the moment they realize they are no longer alone.

Imagine spending a weekend surrounded by families who truly understand your journey while your child meets other children living with similar rare conditions. Learn from researchers and clinicians, participate in research opportunities, make lifelong friendships, and create memories your family will never forget.

This year's conference includes:

🦋 Live Butterfly Release
🐶 Therapy Puppies
🦅 Raptors Show
🦎 Reptile Show
🎨 Face Painting & Crafts
Professional Photography by Positive Exposure
🛍️ Trip to Mall of America
🏒 WhirlyBall (part bumper cars, part basketball, part lacrosse, and all fun!)
🎶 Our 80's Night Celebration – "Everybody Wang Chung Tonight!"
🔬 Educational sessions and research opportunities with leading experts

Thanks to our generous sponsors, approved families may receive:

🏨 Three nights at Embassy Suites Minneapolis Airport (Thursday, Friday & Saturday)
🍽️ Meals and conference activities
💛 A welcoming community that understands the challenges and joys of raising a child with a rare DNA repair disorder

We especially encourage families who have never attended a Share & Care conference before to reach out. First-time attendees are always welcome, and many tell us the experience changed their lives.

Of course, returning families are welcome too! One of our favorite parts of each conference is reconnecting with familiar faces and seeing how the children have grown over the years.

If you have a child affected by Cockayne syndrome (CS), Trichothiodystrophy (TTD), or a related DNA repair disorder and are interested in attending, please comment here or send a message to the Share & Care page so we can help you!

Sometimes, the greatest gift we can offer a family is the opportunity to connect with another family that truly gets it and loves to swap stories. They genuinely care about each other on this journey, and that’s exactly what the Share and Care Cockayne Syndrome Network is all about!

We hope to see you in Minneapolis this July! 💛

06/08/2026

✨ A rare opportunity to connect, learn, and create lifelong friendships is now available! ✨

A small number of openings have become available for the 2026 Share & Care Family Conference in Minneapolis, July 9–12, and we would love to welcome additional families affected by Cockayne syndrome (CS), Trichothiodystrophy (TTD), and related DNA repair disorders.

For many families, attending a Share & Care conference is a life-changing experience. It is often the first time children meet someone else living with the same condition and the first time parents find themselves surrounded by people who truly understand their journey. Families leave with new friendships, valuable medical knowledge, meaningful research opportunities, and memories that last a lifetime.

This year’s conference will bring together families, researchers, clinicians, and advocates from around the world for a unique weekend of connection, education, support, and hope. Attendees will have opportunities to learn about the latest research, participate in studies that may help advance understanding of these rare disorders, meet leading experts, and spend time with other families who share similar experiences.

While we hope to help some first-time families experience the conference this year, we would be delighted to welcome returning families as well. One of the greatest joys of our annual gathering is reconnecting with familiar faces, celebrating milestones, supporting one another through challenges, and watching the children grow. Whether this would be your first conference or your tenth, we encourage you to apply.

Share & Care is able to provide one hotel room per approved family for up to three nights (Thursday, Friday, and Saturday). We recognize that some children have more than one household or family support system, and we wish we could accommodate everyone. Due to limited funding, however, we are only able to provide one room per family. Families requiring additional rooms are welcome to attend and may reserve extra accommodations at their own expense. Families who choose to arrange their own lodging are also welcome to participate, and Share & Care will continue to cover conference meals, activities, educational sessions, and other conference-related programming.

These openings became available after several families had to cancel due to important medical procedures and surgeries. While we will miss them and keep them in our thoughts and prayers, we are grateful for the opportunity to extend invitations to additional families who may benefit from this special gathering.

The conference begins Thursday, July 9, and concludes Sunday, July 12. Additional details, can be found on the registration landing page.

💛 We would love the opportunity to welcome new families into our community, reconnect with returning friends, and continue building the relationships, knowledge, hope, and support that make the Share & Care family so special.

Join us for our 2026 Family Medical Conference for CS and TTD. Beginning Thursday July 9th Check in at hotel/Welcome Desk, Kick off Dinner at 5:00 p.m. with Family introductions. Friday and Saturday Speaker Presentations, Activities for Kids and Families. Sunday July 12 Hotel Checkout- travel home F...

03/11/2026

Be Part of the Change. CS & TTD Families Please complete our database form. 🤗🫶👇
👉 https://shareandcarecockaynesyndromenetwor.my.site.com/sharecare?recordId=a0lVz0000042nDd&logicalId=174e37ea-b8f9-30a5-4a53-b0aa3ebdb5bb&fbclid=IwY2xjawQdrSpleHRuA2FlbQIxMABicmlkETFZd1JJMUpOTFh3RmFEejZXc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHiBboimylCCRcfc_5FfxmBz1ZiZdTN7Yzlpn2BmYDdDUNumG5FM4iBEcTUWg_aem_7JjCQs0HXUruZ5QbXjoxsg

03/05/2026

💛 Rare children teach the world extraordinary things.

These two sweet girls are living with Hutchinson-Gilford Progeria Syndrome (Progeria), a rare genetic condition that causes features of accelerated aging in childhood.

Other rare conditions such as Cockayne syndrome and Trichothiodystrophy can also show aspects of segmental aging, though they arise through a very different mechanism involving DNA repair (the nucleotide excision repair pathway).

Different genes. Different diseases. But every rare child helps scientists understand more about DNA, aging, and resilience. 🦓

03/02/2026

Thanks for Sharing! 🍀