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.

Liz Kennerley’s Blog – UMDF Advocate

I’m Liz Kennerley and I would like to tell you a little bit about myself.  I was born and raised in Pennsylvania. I moved to Massachusetts for college and now live in Washington, DC. I wanted to get as far from home as possible to form my own opinions of the world. This can be challenging being the only child.  My parents are the oldest of six and have strong personalities. I graduated from Simmons College in 2009 with a BA in Society and Health.  My other major was Sociology and minors were Music and Psychology. Because I battle mitochondrial disease, I was constantly in the health center and spent about month off and on in the hospital my senior year.  Despite that, I graduated on time!

One of the things I enjoy doing is advocating for rare diseases with emphasis on mitochondrial disease.   Living in Washington, DC places me at the heart of where important decisions impacting our community are made.

In my opinion, advocating in this space is like a pair of shoes. Just as you cannot buy the left without the right, it is hard to advocate for rare diseases without representation of mitochondrial disease. All rare diseases need research funding to better understand their causes and develop potential cures.  Advocacy is important so that lawmakers understand the connection between mitochondrial dysfunction and so many other more common illnesses.

Over the course of just a few years, I have found myself advocating side-by-side with fellow mitochondrial disease patients, other rare disease patients and advocates.  I have had the opportunity to advocate alongside MDs and PhDs, even CEOs of major pharmaceutical companies! I have had the opportunity to speak with many, prominent elected officials like Senators Orin Hatch of Utah and Sen. Mitch McConnell of Kentucky.   Sometimes, I’m the only one under 60 years old, AND the only woman.

Every time I am advocating on the Hill, I remember that it’s impossible to move in any direction if we can’t make others in government understand our goal.  Our goal is effective treatments and cures.  Those can’t happen in a vacuum and it takes all of us — academics, researcher, government, industry and, of course, patients! I hope you will consider joining us on June 29, 2017 for our mitochondrial disease Day on the Hill.  Take the first step now.  Click here to register.

UMDF OPPOSED H.R. 1313 –Preserving Employee Wellness Programs Act

H.R.  1313 is before the House Ways and Means and Energy and Commerce committees before it advances to the entire House floor. The House Committee on Education and the Workforce approved the bill out of their committee. The Committee, in its approval, noted that the legislation would allow employers to offer employee wellness plans, help them promote a healthy workforce and would lower health care costs.  However, employees who refuse to test could be subject to higher insurance premiums. Currently, employers are prohibited and restricted from asking to collect genetic information from employees under the Genetic Information Nondiscrimination Act (“GINA”), the Americans with Disabilities Act (“ADA”) and other state laws.  H.R.1313 specifically states that GINA and other protections will not apply to genetic testing conducted under a workplace wellness program or a program relating to health promotion or disease prevention.  That is why UMDF opposes it. Under GINA, group health plans (such as employer health plans) are not allowed to request or require genetic testing. Wellness plans are only allowed to disclose employee genetic information to employers in aggregate form so that an individual’s identity remains anonymous. However, employers are allowed to offer genetic testing to employees and receive the test results from employees on a voluntary basis.  Click here to see our letter of opposition and check back to see what action we need you to take should this move to the House floor for consideration.

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.  As you know, this bill is now working its way through Congress and we are watching carefully how any legislation will impact our families.   We invite you to check the UMDF Advocacy Action Center frequently for important alerts and ways for you to participate and make your voice heard on this important issue.

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.