Take Action
1) Sign the Petition
Join us in urging the FDA to approve DCA – the only treatment that has given PDCD kids stability and improved their lives – and to listen to PDCD families, meet our children, and hear our stories. This is not about lowering the bar for scientific evidence. It’s recognizing that for rare diseases, the bar must be different. The FDA should use regulatory flexibility and compassion to weigh patient outcomes, not just numbers.
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2) Contact Your Elected Representatives
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Contact your representatives either by phone or email and let them know why access to therapies for rare diseases like PDCD is so critical. If you have a personal story, share it with them!
You can also use the form letter link below to a send a standardized letter. It only takes seconds and the letter will be sent straight to your representatives. Help us reach our goal of 3,00 leters sent, we are already 3/4 of the way there!​​​​​
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​​​3) Stay Connected
Follow @hopeforpdcd, like our posts, comment, and reshare! Engagement helps our posts reach more people and raise more awareness.​​​​​
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4) Eat Butter!
​Spreading awareness about PDCD is crucial to helping us get DCA approved. You can help by participating in the 2025 Butter Challenge starting November 22nd. More details coming soon.
Check back for updates and more ways you can help! We will be updating this page frequently.