Make the Matches 🙌 Announcing Two Matching Challenges!
The 2018 Giving Season launches with two matching challenges.
Year: 2018
Rare Diseases Are Not Rare!
MdDS warrior submissions to the National Center for Advancing Translational Sciences (NCATS) “Rare Diseases Are Not Rare!” competition.
Hello, This Is Me
1 in 10 Americans has a rare disease or disorder. Globally, the figure is 350 million. Rare diseases are not rare! This poem will resonate with someone you know. Please read and share, Hello This Is Me.
Picture Perfect
After a day of flying and going up 107 stories to a restaurant in the sky, I felt a panic I had never felt before. It felt like I was walking on a bouncing floor.
I Look Normal, by Tami G.
I wrote this poem a number of years ago (maybe 5 years ago) and I sometimes post it as a status update. My daughter is no longer a toddler but the rest holds true. ~ Tami Grosset I look normal. I sit in my chair and chat. I giggle and gossip just like I’ve always […]
A Guide for Our Caregivers
Mike Nelson, full-time caregiver to his wife and also a person with MdDS, shared this helpful guide to help you navigate life with MdDS.
We can do this. I believe in you! ~ Katie
My name is Katie Miller, and I have had MdDS since 2002. I took two short, uneventful flights on a Friday and two similar flights back on the following Sunday. I woke up that Monday with the unnerving sensation of walking on mattresses, and it looked like the walls were moving. I had absolutely no […]
Be Still: a Poem by Farzleen
I am sharing my experience with fellow sufferers of this misunderstood condition because of how it took close to a year before a proper diagnosis was obtained after undergoing many tests, how frustrating and depressing it was prior to that not knowing what was actually happening to me, and for having people closest to me […]