top of page
  • Writer's pictureGenevieve Swilley

Rare Disease Day, and Amplify Austin

Updated: Mar 1, 2023

Yesterday, February 28th, was Rare Disease Day - the rarest day on the calendar. In the United States, a disease is considered rare if it impacts less than 200,000 people. But with 7-10,000 rare diseases in the world... there are hundreds of millions of people out there, just like Rose.

Half of them are children, just like Rose.

95% of those diseases don't have treatments... just like Rose's.

We could fill the city of Austin over 15 TIMES with all of the children in America living with a rare disease, just like Rose. The diseases may be rare, but the people are not.

So for Rare Disease Day, I want to thank you for seeing these children and seeing their struggle. Thank you for being a part of this journey. Thank you for fighting for all the Roses out there. And now, today is another exciting day - the launch of Amplify Austin Day!! It's the biggest giving event in Central TX - and we need your help. This is our first year participating, and our goal is to raise $5,000! Here's what you can do:

1. Share our Amplify Austin page with your network!

2. Start your own fundraiser! You can create a fundraising page, set your own goal, and share why YOU are a member of Team Rosie.

Amplify Austin Day is put on through the organization, I Live Here, I Give Here. They also distribute funds to non-profits in Austin, and the amount that's distributed is proportionate to the amount that we raise. So the more we raise from the public, the more we raise from them!!

(P.S. You do NOT need to live in Austin or Travis County to participate 😉) We've come so far since starting To Cure a Rose, but we have a long way to go. A treatment is just around the corner -- funding is the only thing standing in our way.

Thank you for being here, for donating, and spreading the word. As always, feel free to reach out to me or Casey if you have any questions about Rose, about our work, and our progress.

In Community,

Genevieve Swilley VP of Communications @ To Cure a Rose Foundation

51 views0 comments


bottom of page