State and Federal Advocacy for the Mitochondrial Disease Community2019-08-09T11:54:57+00:00

Federal and State Advocacy Opportunities

UMDF is committed to empowering our entire community through governmental advocacy.  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.

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.

Current “Asks” for your House and Senate Members

► HR 2501 – The Medical Nutrition Equity Act of 2019
This measure was introduced by Rep. Jim McGovern (D-MA) and Rep. Brian Fitzpatrick (R-PA) in May of 2019.  See the entire bill and members of Congress who have signed on as co-sponsors here.

Why this matters to you and your family.

  • While there is no cure for mitochondrial disease, many types of the disease are responsive to specific vitamin and supplement therapies. HR 2501 will cover medically necessary foods and vitamins for patients with mitochondrial disease under federal health programs and private insurance.
  • In many cases, out of pocket expenses for families can range from $300 to more than $1,000 per month. Therefore, MNEA would greatly help mitochondrial patients afford their vitamins and supplements used as therapies in the treatment and management of mitochondrial disease and dysfunction.

How you can be involved.

In order for this legislation to move forward in the House, it need co-sponsors.   If they are not a co-sponsor, ask your Representative to sign onto HR 2501.
You visit the UMDF Advocacy Action Center now and email a letter, make a phone call, or send a post on social media urging your House Member to co-sponsor this important legislation.

Help needed in the U.S. Senate
Senator Robert Casey (D-PA) has indicated he may be willing to introduce a companion bill in the U.S. Senate.   Sen. Casey needs a Republican Senator to introduce the measure with him.

– If you live in a state with a Republican U.S. Senator, ask if he/she will join Senator Casey in introducing a companion bill to HR 2501 in the U.S. Senate.

– Check back often.   Once the measure is introduced in the Senate, we will need you to help us build co-sponsors.

► Ask your Congressman/woman to join our ‘Dear Colleague’ Letter

Rep. McGovern and Rep. Fitzpatrick, who chair our Congressional Mitochondrial Disease Caucus, have authored a letter to thank the National Institutes of Health (NIH) for their work in mitochondrial medicine and to convene a workshop for our scientific and medical community.  The workshop will be designed to work towards the elimination of barriers towards treatments and cures.

Why this is important.

  • The letter asks Dr. Francis Collins at the National Institutes of Health to enable the NIH to take the lead in organizing a follow-up workshop to bring together stakeholders from within the NIH, the extramural research community, Food, and Drug Administration (FDA), the Centers for Disease Control (CDC), patients, families, and industry.  The NIH has not convened such a workshop since 2014.
  • Such a workshop could identify the progress to date and articulate next steps in areas such as the need for improved diagnostic tools, outcomes measures, data integration, and a deeper understanding of nutritional interventions

What can you do?
Download the ‘Dear Colleague’ letter and send it to your Congressman/woman.   Ask him/her to sign onto this important letter.

On the Senate side, we are looking for one Senator from each party to sign and introduce a similar letter.
You can call or email your Senators and ask if they will help.

Congressional Mitochondrial Disease Caucus.

If your Congressman/woman is not already a member of the Congressional Mitochondrial Disease Caucus, ask him/her to join.
You can find our most current list of bi-partisan caucus members here.   You can download an invitation for your House member here and then print or email the invitation to your Congressman/woman.

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
    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
    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
    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
    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
    Information about contacting and communicating with elected officials.
  • Sample Letter to Elected Officials
    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.