STATE ADVOCACY RESOURCES
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MAKING YOUR VOICE HEARD IN YOUR OWN STATE
As a patient, caregiver, family member or friend, your voice has a critical impact on issues that affect the mitochondrial disease community.
State legislation includes:
* Introduction of bills with the goal of securing insurance coverage for the ‘mito cocktail’.
* Proclamations for ‘Awareness Week’
* State Resolutions for a variety of issues.
How can you start?
It all starts with a phone call to set a meeting with your state representative/assembly member. You should also contact your state senator for an appointment.
At the meeting, whether it is with the actual representative or his/her staff, tell your story. Provide him/her with information about mitochondrial disease and its impact on you. Then make your ask.
Remember to thank the representative/senator or staff member for their time.
You may not get an answer right away.
That is why you must follow up with calls, emails and additional visits.
How UMDF will support you?
We wish we could be on the ground with you in your state — but this must be done by the residents of our community who live in your state.
We can help you with the information you will need for your meeting. If legislation is introduced, we will let members of the mitochondrial disease community in your state know about it and provide instructions to them to help you secure co-sponsors. Our Advocacy Action Center is open for your use– let us help!