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Achondroplasia Advocacy

Food and Drug Administration

On May 11, 2018 I had the opportunity to speak on behalf of myself at the Food and Drug Administration. I spoke in support of furthering medical options for achondroplasia. It was a surreal experience to present my stance on the matter to the advisory committee and voting members who have the power to make change for children who may benefit from this option.

My platform is that everyone should have a choice. As a young woman who carries the FGFR3 gene that causes achondroplasia, I want options for future children I may have. These new pharmaceutical trials need to be open to infants for best results. There is controversy surrounding this research. Someone with a different viewpoint shouldn’t be able to limit your choices. You do you.

Thank you to Global Genes fro providing my travel.




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