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 last day in February and use all of my limited energy to do what I can to help spread the word about it. I live with rare disorders myself, so this day and its message are very important to me. This year, I am excited to announce some new events I have planned!
Just like last year, I will be hosting an educational stream on my Twitch channel where I talk about rare disorders and share stories of real people who have them. This year, I will be doing that again, but I will also be offering my newly discovered emote making skills to help raise money for the organizations that help people who are affected by rare diseases, or groups who fund research to find treatments and cures for them. There are many different groups out there who could use the financial support. During the stream, if you give $5 or more to the nonprofit of your choice, I will make an emote for you on stream! All you have to do is post a screenshot in my discord server of your receipt or confirmation as proof that you have donated (you can redact personal info of course), and tell me what you want for your emote! Just make sure your request follows the Twitch TOS (Limit 3 emotes per person so everyone gets a chance to see me work on their emote during the stream. 🙂).
Later on that day, I will be hosting a seminar about Rare Disease Day in virtual reality on a platform called AltspaceVR! You don’t have to have a VR headset to join in as long as you have a Windows computer. Just download the 2D application on their website and make a free account! The presentation will be about an hour long and there will be an opportunity for Q&A afterwards. Here is the event link so you can RSVP when you have an account. If you are interested, I also host a weekly support group on Altspace every Sunday at 6pm EST for invisible disabilities and chronic illness. Rare folks are always welcome there as well!
Here is the schedule I am planning:
9am EST – 1pm EST
(15 min. break after each hour)
2pm EST – 3pm EST
I might potentially have another stream on Twitch later that evening if I have the energy!