I am NOT a member of NORD and I am not claiming to be collecting money on their behalf. Please read the entire article! Thanks! 🙂 I'm trying to gather funds so that I can attend the National Organization for Rare Disorders, Inc. (NORD) Rare Patients Forum this year in Cleveland, OH. A lot of … Continue reading Please help me attend the NORD 2020 Rare Patients Forum!
February 29th, the most rare day on the calendar, is Rare Disease Day! This is an internationally recognized day dedicated to spreading awareness of the existence of rare disorders as well as an opportunity to learn about and support legislation that will help those affected by them. Every year, I host events online on the … Continue reading Rare Disease Day 2020
October 1st 2019 was the first annual Rare Cancer Day event promoted by the National Organization of Rare Disorders (NORD). With their permission and enthusiastic support, I was permitted to rebroadcast their webinar and share stories of patients living with a variety of rare cancers. I hosted an awareness stream on my Twitch channel which … Continue reading #RareCancerDay 2019 Roundup
Since I’ve been back on GH for a while and have recovered from that acute respiratory illness as well, I am feeling more like myself again! ❤️ Now that I have a little more energy than I have had lately, I am going to get back to doing more advocacy work for rare conditions. October … Continue reading #RareCancerDay
🚨 Stream Announcement 🚨I’m always cautious about making plans to schedule a stream because my body likes to be as spontaneous as I am 🤣 but I wanted to give you guys a heads up that a couple friends and I are planning on having a special rare disease awareness stream on August 14th starting … Continue reading Upcoming Rare Disease Awareness Stream
Up until now, there were no sponsored posts or advertisements that made them any money off of my stories. Now it looks like that is changing, and I feel betrayed.
Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) … Continue reading Rare Disease Day 2019
It may seem a little silly for someone who struggles with a disability to "set goals". I think that for the most part, society expects disabled individuals to just sit at home and do nothing. They can't work. They can't do the same things neurotypical folks can do, so why would they focus on setting … Continue reading Setting goals for 2019
It's going on 11pm. I've been contemplating sleep since 8. Rather than catching some sweet sweet "Z"s however, my mind is fixated on a regret I have, and now I feel the need to write about it so I can get this off my chest. I regret that I never reported one of my ex-bosses … Continue reading Late Night Confessions
Yesterday was one of my most stressful days in a very long time, but it was also a day filled with the joy of relief that the hearing was over, no longer looming over my head with fears that I might somehow ruin everything I have been working for over the last year and a … Continue reading My Disability Hearing