Want to get pinned?

This is not a plug in any way for the Global Genes Project, and I did not get anything for writing this post.

I have thought about this for a while and decided to buy something tonight – I bought these.  Why?  Because I am a champion of 2 rare diseases, Cowden’s Syndrome and Lhermitte-duclos disease.  (Although today I didn’t feel like a champion at all.  Very rough day.  Brain tumors were all up in my business today and it really caused me to be a huge funk.  I struggled all day to stay out of it.)  But anything I do to raise awareness (no matter how small) buoys me up, especially on days like today.  It’s small; it’s subtle – but a little really does go a long way!

I am going to give them to 2 of my doctors (and maybe a few more people too.  Let me know if you’d like one!  It’s a small way to show your support for the Rare Disease Community – and to ME too!) but I have to keep one for myself of course.  🙂 So if any of my doctors are reading this – be ready for a gift soon!


One thought on “Want to get pinned?

  1. The Global Genes Project is doing awesome things for the rare disease community! I co-founded a non-profit org, Taylor’s Tale, for another rare disease called Batten disease. We announced funding for gene therapy at UNC on World Rare Disease Day (Feb. 28), and we all wore our “genes” ribbons at the event and distributed ribbons to everyone who attended. You’re so right; awareness – even something as small as wearing a ribbon and giving one to a friend – goes a LONG way toward supporting our shared mission!

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