Tuesday, June 19, 2012

UMDF 2012: Day on the Hill

Thursday: Day on the Hill
As it was explained in our Wednesday evening training session, we have two asks for government. And, I have one ask for you - to contact your local reps and ask them to help.
1-     For those in the House to agree to sign on to a Mitochondrial Disease caucus.
2-     For those in the Senate to co-sign Senate Res. 490.
More than 230 members of the UMDF fanned out across Capitol Hill on behalf of all of those whose lives are touched by mitochondrial disease. We visited more than 80 congressional offices and 42 offices in the U.S. Senate.  
Earlier this month, Representatives Anna Eshoo (D-14-CA) and Tim Murphy (R-18-PA) founded the Mitochondrial Disease Caucus. The caucus will serve as a forum for members of Congress and their staff to learn about mitochondrial disease and related illnesses. The Mitochondrial Disease Caucus will provide support for the efforts of agencies such as the NIH and the Department of Defense to support cutting edge research into mitochondrial disease toward the goal of developing therapies and cures for specific diseases and new insights into many major disorders. You can see the letter that was sent to Congress from Representatives Eshoo and Murphy here.
On Tuesday, June 12 2012, Senator Barbara Boxer of California introduced Senate Resolution 490. Recently, the National Institutes of Health and UMDF conducted a workshop that explored the opportunities and barriers that exist in primary mitochondrial disease research. The result of this workshop was the development of a White Paper that applauds the NIH for its role as a leader in the field as we move forward. It also recommends enhanced emphasis on basic mitochondrial research; supporting research that will provide the basis for drug development, improved mouse models, and next generation sequencing; expansion and support of stable, long-term patient registries and a biospecimen repositories; and the creation of a working group to develop a system for continued interaction with NIH Institutes and the extramural community. Sen. Boxer's resolution applauds the NIH for this effort and encourages them to follow the recommendations made in the White Paper. You can see the resolution here.
So, now I have a favor to ask you. Please contact your local representatives and ask them to join the Caucus or Co-sign Senate Res 490.
Log into the UMDF ACTION CENTER (if you don't have a user name and password, simply sign up).
ASK YOUR SENATORS TO CO-SPONSOR S. RES. 490 and ask your CONGRESSMAN/WOMAN TO JOIN THE CAUCUS! You don’t have to even mail a letter, just log on and click. Please.
I had the joy of walking around to do some sightseeing that morning with some new mito friends, including a Mito-affected young adult named Liz. Her gait was slower and her words were not as clear, but she trudged along with the rest of the group to ask people to help her and those who couldn’t come she made me smile. Anytime I thought I was hot or my feet hurt, I thought about Liz and Will.
I would walk a million miles if it meant a treatment or a cure. Please join me on a virtual walk to help people like Liz and Will to find a treatment or a cure. Log on and sign up today. I promise, you won’t get hot or sweaty or have hurting feet.

The buses pulling up at the Capitol. We experienced DC traffic as it took at least an hour to get there.

On the "house side" of the Capitol

I thought this statue was appropriate - what I view as mother of justice doing right for her children.


  1. You rock, Lori! I will be contacting my Rep and our Senators. What an empowering day.

  2. Jennifer, thank you so much for contacting our reps! It's much appreciated. I have had a few others email me that they are doing the same too. So thank you everyone!