New “Stare Cards” For Cockayne Syndrome

Last summer,  I made up some ‘stare cards’  for CS to hand out when I have Knox with me.

I have passed out lots of cards in the last few months.

Yesterday, some other CS moms expressed interest in these on Facebook.  I worked on them all evening, re-working the text, cleaning up the lines, and adding red hearts.

Below is the link to download a sheet of 4 cards.

If you are a CS parent, relative, caretaker or friend,  please feel free to print off as many of these as you need.

Love, Knox and family  🙂


Download Stare Cards   ( UK site)

Download Stare Cards   ( US site)



  1. thats a wonderful positive way to deal with an uncomfortable situation. God Bless you for your generous heart Scarlett! xoxo

  2. This is a beautiful solution for yourself and others. While it is a great coping mechanism for you, it enables (rude) people to educate themselves and might even teach them some empathy. When you put out good thoughts and kind acts it always comes back to you 100 fold. Keep on filling your life with grace and love.

  3. I couldn’t have said it better than Renee just did… t.xooxoxoxoox

  4. What a great way to deal with all the staring people! I like your design!

  5. What a lovely idea. I have a grandson with CP, I will put my mind to something similar for my daughter. Hugs..

  6. I’m glad you found such a positive way to handle this situation. The design for your card is beautiful! Wish you all the best! ~Sophia

  7. That’s beautiful, Scarlett; and what a wonderful gift you are sharing with others. love and prayers, sue

  8. What a positive way to handle the stares~ People need to be educated and know the truth~
    I hope it helps, you did a wonderful job with this project~

    Sending you my thoughts n’ prayers!

  9. Hi Scarlett .. they are beautiful – with a positive force as a reminder – humans are just beings at all times … regardless of how they look, who they are etc ..

    Scarlett – you’re so talented .. these are wonderful .. with big hugs – Hilary

  10. Fantastic idea and beautiful cards. People are curious by nature and probably don’t mean to be rude by staring. This is a wonderful way to educate them. Have you thought about adding a little note with a site where they could learn more or better yet, one where they could give a donation for research?

  11. Wonderful idea, and beautifully put.

  12. I think this is amazing! I am special educator, and an advocate for children with disabilities. People can be so ignorant when it comes to anyone that is “different” by society’s standards. Good for you! I am going to print these out to show to everyone on my team.

    • @Ashley –Hi, thanks so much for your kind comment. The cards work really well for us and I’m glad you found the post..hope it can inspire others as well! Thanks again for your visit!

  13. Graciela Spivak

    I am a scientist working on CS. The cards are beautiful, I will use them for my talks. Thank you!

    • @Graciela –Wonderful, I’m glad you found them! I’m thankful for each and every researcher, May God Bless your efforts!! Thank’s for letting me know you were here 🙂

  14. Hi Scarlett – I just wanted to say a quick hello and thank you for the lovely day I had meeting with you and your children in North Wales.
    Hope that you all enjoyed your extra days travelling in the UK and hopefully next year I will be free when you come over so I can introduce you to some other nice places to visit in this area.
    Hugs & kisses to you all especially Knox (hopefully you had an easier flight home) Marg xxx

    • Hi Marg! It was so great to meet you! I enjoyed talking with you and introducing you to my special boy. We had a great time, I’ve almost got a post ready to go with some photos. Our flight home was fine, now to get back to our local time and life as usual. Wish we could’ve stayed longer. I truly love England and am already looking forward to next year! Have a great weekend and keep in touch! Scarlett

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