Rare Disease Day 2021 YouTube Livestream and Valheim Giveaway!

I’ll be hosting a live stream on YouTube to raise awareness for Rare Disease Day. I’ll read aloud patient stories found on the official Rare Disease Day website and encourage viewers to donate to causes that benefit patients living with rare diseases. During the stream, I'll play Valheim to pass the time while chatting with … Continue reading Rare Disease Day 2021 YouTube Livestream and Valheim Giveaway!

NORD’s Living Rare Forum was Virtual in 2020, Here’s how it went

https://soundcloud.com/sunny-ammerman/nords-living-rare-forum-was-virtual-in-2020-heres-how-it-went As a rare disease patient and advocate, I have been an enthusiastic supporter of the National Organization for Rare Disorders (NORD) for many years, so I was absolutely thrilled when I discovered the annual NORD Living Rare, Living Stronger Patient Forum was coming to Cleveland, Ohio in 2020! It's only a few hours away … Continue reading NORD’s Living Rare Forum was Virtual in 2020, Here’s how it went

What PE taught me about my Rare Disease

https://soundcloud.com/sunny-ammerman/what-pe-taught-me-about-my-rare-disease I had originally planned for this article to be about my history of failing Physical Education (PE) classes. I suspected that because I was not properly educated on the health issues caused by my rare disease at the time, and had an inability to exercise like my peers, that this had a negative impact … Continue reading What PE taught me about my Rare Disease

5 tips for keeping good mental health while stuck at home (from someone who has had lots of practice)

I've got eyesight so bad I can't legally obtain a drivers license, and health so unpredictable I'm unable to work, so I've had to get used to spending a lot of time stuck at home. When states across the U.S. started ordering residents to shelter in place to flatten the curve of the rapidly growing … Continue reading 5 tips for keeping good mental health while stuck at home (from someone who has had lots of practice)