Take Legislative Action
Educating yourself how to better interact and advocate for policy change can help you to feel more confident about where you stand on certain issues and what role you may serve.
Taking legislative action can be intimidating and often serves as a barrier for people who want to become more involved with policy change. Taking an active interest in legislature is a great first step and we are here to help arm you with the resources you may need to become more involved. Educating yourself how to better interact and advocate for policy change can help you to feel more confident about where you stand on certain issues and what role you may serve.
Our goal is to provide you with not only a basic understanding of government structure, but also help you to understand the entire process and how you can interact directly with your local representatives to specifically address certain issues that are important to you. Your voice is important and by educating yourself, you can make a difference.
Below are resources and ways for you to take an active role in legislative issues important to you and the mitochondrialRelated to the mitochondria. disease community:
Elamipretide Action Week August 18-22, 2025
The FDA has refused Stealth BioTherapeutics’ request to reconsider its application for elamipretide—despite earlier indications from FDA reviewers that such a request was appropriate. Instead, the FDA has instructed Stealth to resubmit under the accelerated approval pathway with a 6-month review timeline, the longer of two options. This delay, coupled with financial constraints facing Stealth, puts the future of elamipretide—and the Expanded Access Program (EAP) through which patients currently receive it—at serious risk. Without immediate action or a shortened review, access could end as soon as September, leaving individuals with Barth syndromeA rare, genetic disorder of lipid metabolism that primarily affects males. and other mitochondrial diseases without the only treatment shown to improve symptoms.
We are calling on the community to advocate by participating in Elamipretide Action Week and the social media #ShotsForShotsChallenge. We have outlined a week of ways to participate in advocacy from anywhere, from August 18 through 22, to convey the urgency and to keep elamipretide at the forefront. Every voice matters—together, we can push for the urgent action needed to preserve access to this critical therapy.
Click HERE to see how you can participate August 18-22 on social media and through legislative action!
