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
NORD
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 … Continue reading Site Changes and Life Updates
#RareCancerDay 2019 Roundup
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
#RareCancerDay
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
Insomnia Doodles 