Care Manuals
- Cockayne Syndrome Foundation
- Mar 3
- 2 min read
Updated: Mar 9
Below is an excerpt from the dedication of the manuals. Bring these manuals with you to your Dr. appointments, share them with your medical teams. Please come back and comment if you feel something is missing. We are currently working on Edition 2 of the Manuals with updated research.
Dedication from the 2021 CS Manuals:
To all of the parents around the world who have walked this path daily, shedding light and working so feverishly to get information as well as support and advocate for CS research: we thank you. For the families who have children living with CS: we walk beside you. For the families who received a recent diagnosis: we know the grief you experience, but we are grateful that you have found this manual. We understand the path you walk, and you are never alone.
The dream to compile this comprehensive manual was inspired by many CS parents and children/angels around the world. The hope is to have a go-to resource providing guidance for clinicians and the medical team, and support for parents and caregivers. Many of our CS angels sacrificed for lessons our future CS kids will benefit from. Their lives were never in vain.
Sincere thanks to many CS parents around the world who came together to provide feedback on what would be necessary to include in this manual.
To our Clinical Advisory Board members: without you and your amazing contributions, this manual would never have taken the form that it is before us. We are forever grateful for all of your hard work. We know that this manual is not the end of your CS work—that children not even diagnosed yet will benefit from all of your research and expertise for years to come.
Additionally, we would like to acknowledge Thistle Editorial LLC, who provided assistance with content development for these current versions from 2021.
Lastly, we offer our thanks to the National Initiative for Cockayne Syndrome,
without whose support and stewardship, this manual would never have been
completed.
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