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.

UMDF Legislation Tracker

Follow legislation impacting the mitochondrial disease community of a federal and state level.

PROTECT MITO RESEARCH UNDER THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP)

Visit the UMDF Advocacy in Action Center now and urge tour Congressman and Senators to sign onto “Dear Colleague” Letters

CDMRP’s highly innovative research portfolio drives scientific discovery in high-impact research areas not sponsored by the National Institutes of Health (NIH) and other federal agencies. Among those peer-reviewed research programs is mitochondrial dysfunction.  Research clearly shows that illnesses such as Gulf War Syndrome and traumatic brain injuries are implicated by dysfunctioning mitochondria.

CMDRP has provided more than $11 million to researchers to not only impact treatments cures for these conditions, but could develop potential treatments and cures for the 1 in 4000 people who are born with a mitochondrial disease in the United States.

The “Dear Colleague Letter” is being circulated by our Congressional Mitochondrial Disease Caucus Co-Chair, Rep. Ryan Costello and by Rep. Peter King, Rep. Dave Loebsack, and Rep. Sanford Bishop.    It  requests that any final National Defense Authorization Act (NDAA) Conference Report legislation excludes four provisions in the Senate-passed FY2018 NDAA (Sections 733, 891, 892, and 893), which would bring the CDMRP to a halt – jeopardizing healthcare for warfighters, veterans, and their families both now and in the future.

Urge your Congressman to join with dozens of his/her colleagues in the House and add his/her  name and support  to a ‘Dear Colleague letter to the Chairmen and Ranking Members of the House and Senate Armed Services Committees.  This letter expresses strong support for the Congressionally-Directed Medical Research Program (CDMRP) at the U.S. Department of Defense (DoD).

There is also a companion letter that is being circulated by Senators Durbin and Blunt — Please send that to your Senator Today!


IMPORTANT — Support Legislation to cover Medical Foods and Supplements

There are two pieces of legislation in both the house and senate that need the attention of those in the mitochondrial disease community.
In the house, H.R. 2587, if enacted, would provide for the coverage of medically necessary food and vitamins for digestive and inherited metabolic disorders under Federal health programs and private health insurance, and for other purposes.   This measure carries 9 co-sponsors.   We urge you to call or send a letter in the action center to your House member asking him or her to co-sponsor HR 2587, or help in any way to get this measure through.    You may also want to discuss in financial terms your monthly ‘out of pocket’ costs.

In the Senate, a similar bill, S.1194, was introduced by Senator Robert Casey (D-PA) and Senator Chuck Grassley (R-IA).  Senator Sherrod Brown (D-OH) has agreed to co-sponsor.  We need you to call your Senators or send a letter asking them to support and/or co-sponsor the ‘‘Medical Nutrition Equity Act of 2017’’.

You may also click here to enter the UMDF Advocacy in Action Center and send a letter to your Congressman and Senators.
The letter can be edited so that you can add personal ‘out of pocket’ details.

New Congressional Caucus Co-Chair

UMDF thanks The Honorable Brian K. Fitzpatrick (R-PA-08) for enthusiastically agreeing to serve as co-chair for the Congressional Mitochondrial Disease Caucus.   Rep. Fitzpatrick will join with The Honorable Jim P. McGovern (D-MA-02) to provide leadership for this bi-partisan caucus!

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.