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 …

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Fond Memory of an Anxious Moment

I’m an artist. Not a professional, by any means. I lack confidence in my own work, which I’m sure is a common trope amongst creative types. About four years ago, my local art gallery asked for submissions for a regional art exhibit. I had just made a really poignant piece detailing life with a chronic …

VR Spoonies Chronic Illness & Disability Support Group Celebrates 3rd Anniversary

Three years ago today, I hosted the very first meeting for what is now a really tight-knit, wonderful community of folks with a wide variety of conditions which impact day-to-day functionality.

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 …

It’s been a while!

I apologize for not updating this blog in quite some time. I'll admit, things got so hectic and I had neglected this site so much as a result that I even considered giving up on blogging and not renewing the domain name. I'm glad I decided against that, because I think things are beginning to …

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 …

Mom’s Near Death Experience

Earlier today, I attended an EvolVR discussion group in a Virtual Reality social platform called Altspace where people were invited to share their thoughts about death and whether or not they believe there is an afterlife. I showed up near the end of the event, and people were talking about the phenomenon of near death …

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 …

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 …

Site Changes and Life Updates

It's been quite a while since I've published a new article here! There are many reasons for that, from a long period of extended illness (which seems to be getting under control now thanks to a change in my treatment) to sudden and very exciting new life changes that I am eager to share with …