State and Federal Advocacy for the Mitochondrial Disease Community2019-02-27T12:08:02+00:00

Federal and State Advocacy Opportunities

UMDF is committed to empowering our entire community through governmental advocacy.  Our next “Day on the Hill” is schedule for June 27, 2019. We will work with you on the federal and state level to help educate and impact decisions that address the needs of the entire mitochondrial disease patient community as part of the “Roadmap to a Cure”.

NEED HELP WITH ADVOCACY IN YOUR STATE?
Visit our State Advocacy Resource Page


ADDITIONAL SUPPORT:

– Scroll down and review the UMDF Legislative Tracker to see all state and federal legislation that impacts the Mitochondrial Disease Community.
– Scroll down for the UMDF Advocacy Tool Kit and meeting preparation sheets should you schedule a meeting with elected officials.
– Can’t find what you need?  Contact UMDF via email or call 888-317-8633


REMEMBER
We can only help support statewide efforts that you tell UMDF about.   Let us know about any pending legislation you secured or bills that need state and community support.  With that information, we can help mobilize the entire community in your state through eblasts and other ways to garner support and help you be successful!

UMDF IS WATCHING THE FOLLOWING STATE LEVEL LEGISLATION
Make sure you take action in the UMDF Advocacy Action Center on  state issues that apply to you!

Check back for the introduction of new bills for the 2019-20 session.


UMDF LEGISLATION TRACKER

Use this tool to review and research important state and federal legislation for our community.

Share your voice for our community!
Participate in our “2019 Day on the Hill”

 

What can you do now?

  • Don’t know who your Congressman is?  Not a problem, just click here and provide your address and learn who represents you in Washington, D.C.

  • Is your Congressman is a member of the UMDF’s Congressional Mitochondrial Disease Caucus? If not, ask him/her to join!  Click here to see the complete list.

  • Start a grass roots campaign in your state on a number of issues — find out how to begin here.

  • Vists the Action Center link below and start making your voice heard today!

VISIT THE UMDF ADVOCACY ACTION CENTER

Want to learn more about how to advocate?

Advocacy Help
To assist you in your advocacy, we are pleased to present a toolkit which provides guidelines for working with elected officials and for engaging the media.  Included are fact sheets, talking points, sample letters and sample media materials to give you everything you need to begin your advocacy campaign.

You are our best advocate.  It is critical that we tell the UMDF story and your individual stories to a much broader audience.  Our messages must be consistent and clear in order to make mitochondrial disease more readily recognizable and to create a sense of urgency among policy makers and the medical community.

Materials have been developed for you to download and to help you convey important, easy to understand information about the disease and the need for additional research.

Thank you for your support!

Advocacy Toolkit

WANT TO LEARN MORE ABOUT HOW TO ADVOCATE? To assist you in your advocacy, we are pleased to present a toolkit which provides guidelines for working with elected officials and for engaging the media. Included are fact sheets, talking points, sample letters and sample media materials to give you everything you need to begin your advocacy campaign. These materials have been developed for you to download and to help you convey important, easy to understand information about the disease and the need for additional research.

Thank you for your support!

  • Advocacy Toolkit– (PDF)
    This booklet contains all of the documents below.
  • About UMDF– (PDF)
    This document describes the UMDF mission and goals and can be downloaded for elected officials and media who need more information about the national organization.
  • Links to other diseases– (PDF)
    Defects in mitochondrial function are at the core of many common diseases and conditions.  This document provides the links these diseases.  This is a document that can be sent to or left with elected officials, or given to the media.
  • Frequently Asked Questions– (PDF)
    This document provides the answers to many of the questions asked about mitochondrial disease.  This is a document that can be sent to or left with elected officials, or given to the media.
  • Talking Points (PDF)
    This document provides the message that we all must use when speaking to elected officials and to the media.  Core messages are bolded.  Below each core message are additional points that you may add.
  • Working with Elected Officials– (PDF)
    Information about contacting and communicating with elected officials.
  • Sample Letter to Elected Officials– (Word Document)
    You can view a sample letter to an elected official, or download the information into a Word Document, so that you may copy and paste to create and personalize your own letter.  Please include personal stories.
  • Working with the Media– (PDF)
    Information on how to contact the media to promote stories and information happening in your state or community.
  • Writing a Letter to the Editor– (PDF)
    Sample Letter to the Editor– (Word Document)
    Tips on writing a letter to the editor of your local paper.  You can also copy and paste a sample letter.  Make the letter personalized with your information as well.
  • Writing an Op/Ed Piece – (PDF)
    Sample Op/Ed Piece– (Word Document)
    Tools to detail the creation of an Op/Ed piece for your local newspaper.  You can also copy a sample op/ed piece to use after you’ve added your personalized information as well.
  • Sample Media Advisory– (PDF)
    A sample of a media advisory to help you create media awareness is available.  ALL RELEASES AND ADVISORIES MUST BE SUBMITTED TO THE UMDF NATIONAL COMMUNICATIONS OFFICE BEFORE THEY ARE SENT TO THE MEDIA.
  • Sample Press Release– (PDF)
    For your use in structuring a media release.  ALL RELEASES AND ADVISORIES MUST BE SUBMITTED TO THE UMDF NATIONAL COMMUNICATIONS OFFICE BEFORE THEY ARE SENT TO THE MEDIA.
  • Additional Resources– (PDF)
    Links to other web sites that may be helpful.