1. Get Social
Download out social media kit and show the world you support Cystinura Awareness Day.
Download the Social Media Kit Here
2. Share your story about what it’s like to live with Cystinuria.
Share your story and we’ll post it on the site. As we raise awareness of Cystinuria, its good to have real life stories of what it’s like living with this disease so people can understand Cystinuria and the impact on people lives and those around them.
Click Here to Share Your Story
3. Does your state currently
recognize “Cystinuria Awareness Day” ?
If you would like to help represent ICF, to have your state recognize Cystinuria Awareness Day, please contact us.
Whats involved if I want to have my state recognize Cystinuria Awareness Day?
Michelle Gibbs was instrumental in getting the day officially recognized in California.
Here is how she describes how the process went for her.
Firstly, I would say, anyone interested should message Gayle Sweeney a the International Cystinuria Foundation. She has been coordinating these volunteer efforts for year, and knows which states already have either a proclamation or resolution for Cystinuria Awareness Day.
I jumped at the chance to make that happen in my state!
Since some states already have similar bills, Gayle had someone send me a sample of the language from another state, so I just needed to make a few changes here and there to fit my particular state. From there, it was a matter of contacting the right person in the state legislature to ask them to introduce the bill for me. I began this quest back in 2019. Each state has their own rules and deadlines on the process, so my initial request for a proclamation had to be changed to a request for a concurrent resolution.
My representative in the state Assembly agreed to introduce the bill, but he also happened to be running for a seat in the Senate that year, which delayed the resolution. At first, this was because he was in the middle of an election, and then when he won, he had to change his office and staff over to the Senate. With all these delays, we missed the deadline again, so I had to wait to contact him at the beginning of 2020. We all know how that year went! lol
After successfully introducing the bill, getting a unanimous vote to pass the bill (39-0) in the Senate, Covid hit and the resolution ended up “dying” because our legislature stopped meeting, and it was never heard in the Assembly.
With 2020 behind us, I took a chance and contacted my Senator again in January of this year to ask if he would re-introduce the bill. He agreed, and we just got our new bill number! I didn’t have to rewrite anything. The moral of this story is, “persistence is key.” I don’t think the process itself is hard. I also think it’s probably usually a lot faster!
– Michelle Gibbs