Advocate

The United Mitochondrial Disease Foundation is committed to increasing funding for mitochondrial disease research now – to alleviate the suffering of thousands who have this debilitating and often fatal disease and to develop better understanding of and treatments for the many common illnesses and chronic conditions associated with it.

To expedite this action and ensure Congress, the medical community and the general public understand the importance of mitochondrial disease research, we must call on our the affected community, their friends and families, to advocate for all.

Concerned about “Replace and Repeal” of the Affordable Care Act?

We want you to know that the current process of “repealing and replacing” the Affordable Care Act (ACA), also known as Obamacare, is of great concern to UMDF.  Click here to see our position on “Replace and Repeal”.  Many who suffer with mitochondrial disease have historically experienced difficulties obtaining affordable health care coverage.  The requirements of the ACA regarding robust coverage of those with pre-existing conditions under family, individual and small group plans has been particularly important for many patients and families.

While UMDF’s preference would be to leave the ACA’s current coverage scheme in place and work on sensible modifications to address premiums, coverage and other issues, we recognize that Congress and the President are likely to make more dramatic changes.  You can rest assured we will be advocating for this issue on your behalf on Capitol Hill. However, during this process, let your voice be heard.   Click here to visit the UMDF Advocacy Action Center and send a letter to your Congressman and U.S. Senators asking them to consider some important issues affecting mitochondrial disease patients and families as they work to repeal and replace the ACA.

What can you do now?

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.
  • Mitochondrial Disease Fact Sheet– (PDF)
    This document describes mitochondrial disease, incidents and prevalence and links to other diseases.  This is a document that can be sent to or left with elected officials, or given to the media.
  • 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.