Rare Disease Day 2023

It's that time of year again! As always, I get REALLY into #RareDiseaseDay festivities all throughout the month, culminating in a big charity event on Rare Disease Day, which falls on the last day of February. I'm excited to share that not only am I doing the usual Rare Disease Day charity stream on my … Continue reading Rare Disease Day 2023

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Chronic Illness: What I’ve learned, un-learned, and am still learning

Visually impaired like me? I've got you- here's the audio recording of this article: https://soundcloud.com/sunny-ammerman/article-transcription-chronic-illness-what-ive-learned-un-learned-and-am-still-learning?si=893062727ce244f3a04e038368c94561&utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing It's been such a long time, but I'm back! I really miss blogging. I think it's time I made it a habit again. A lot has happened since I was last posting actively here. I'll try my best to keep … Continue reading Chronic Illness: What I’ve learned, un-learned, and am still learning

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