UMDF 2012 Mitochondrial Symposium Day 2- Day on the Hill

On Thursday, June 14th, I awoke bright and early to get ready for a day of mitochondrial advocacy! I was headed to Capitol Hill with 2 whole bus loads of folks ready to spread awareness to our national legislators about mitochondrial disease.

Once aboard the buses, I had the opportunity to sit and visit with Lori, whom I had met at a mitochondrial dinner in Houston.  Since we were both living in Houston Texas, we would be going to some of the same congressional meetings later in the day. It was nice to share stories and experiences on the long, traffic ridden ride to the Capitol. Lori has a little one, close in age to Lady A (3yr.), who has been diagnosed with a type of Mitochondrial disease called Leigh’s disease. She blogs about their Mitochondrial journey here (including her recap of the day on the hill!)

Once at the Capitol, we decided to be typical tourists and take some photos!

Me in front of the Capitol on the 2012 UMDF Day on the Hill~ Advocating for Mitochondrial Disease

Lori in front of the Capital for UMDF’s Day on the Hill~ Advocating for Mitochondrial Disease Awareness

 Then it was off to our first meeting with our House of Representatives contacts.  I was headed to meet Norman Singleton at Congressman Ron Paul’s office and Lori was headed to meet with a representative from Congresswoman Sheila Jackson Lee’s office. For members of the House of Representatives we were specifically asking for these representatives (or members of their staff) to join the newly formed Mitochondrial Disease Caucus. Here is the letter announcing the caucus that Representatives Anna Eshoo (D-14-CA) and Tim Murphy (R-18-PA) founded.

 More about the Caucus from the UMDF:

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.


After my morning meeting, I was taken on a great tour of the capital organized by a family friend in Congressman Mike Pence‘s office (thanks Josh!). I even got to sit in the balcony of the House of Representatives (too bad they were not in session that day!).  After meeting Lori for lunch in the cafeteria, we hiked to the “other side” of the Capitol for our Senate meetings in the afternoon.  First, we would be meeting at Senator Cornyn‘s office and then at Senator Kay Bailey Hutchison’s office.  These were “group” meetings with other UMDF members from Texas. I was honored to be part of the distinguished group with Dan Wright (and his wife, Pat), the Chairperson of the UMDFDebra Schindler (and her husband Oscar), the president of the Houston UMDF chapter; as well as Lori Martin dedicated MitoMom and VP at a Houston PR firm.

The Gals (Kristi, Lori, Debra, and Pat) standing outside Senator John Cornyn’s office

The Texas UMDF representatives

At both of these meetings our “ASK” was that the Senators co-sponsor:

 Senate Resolution 490.

More about the Resolution from the UMDF:

On Tuesday, June 12 2012, Senator Barbara Boxer of California introduced Senate Resolution 490. Recently, the NIH 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.

Again YOU CAN DO JUST WHAT WE DID IN PERSON…with the CLICK of your MOUSE and a few KEYSTROKES to ASK YOUR SENATORS TO CO-SPONSOR SENATE RESOLUTION 490 (Oh and did I mention it is NOT asking for any additional $, just for follow through on the NIH/UMDF white paper, which asks for coordination of the $ already being spent by the NIH for mitochondrial research!):  HERE

As we finished up our meetings and headed back to the bus, I had the privilege of meeting and chatting with some other mito families and providers.  On the lawn of the Capitol I met Mike Kendall of Virtual Medical Practice in Atlanta Georgia and Sebastian Cotte (who I had “met” on twitter before the conference!). Mike works with Dr. Fran Kendall a mitochondrial doctor we have consulted with for Lady A. Sebastian had flown in that morning, making a very tough decision to attend the conference to learn more about how to help his young son, Jagger, with Leigh’s disease ,who was in the hospital for a fever- truly one of the most dedicated mito-daddy’s I have ever met!  Once we got on the bus, I got to chat with a couple that Lori and I had met on our way to our Senate Meetings. Andrew Nesseth and Lindsay Chapman from Minnesota, parents to Little Leo, who died of a mitochondrial disease, Alpers, just days after his first birthday. Andrew and Lindsey and their cousin Anne, shared their journey and pictures of sweet little Leo, with his crystal blue eyes.  I have so much admiration and respect for this family (and others whom I met) who traveled across the country, to advocate for mitochondrial disease on Capitol Hill, while the grief of the loss of their child, was all too recent.

Lori, Andrew, Lindsey, Anne and me after returning from Capitol Hill

Overall it was an amazing, emotion filled day! I was honored and privileged to join more than 230 members of the UMDF  as we covered Capitol Hill advocating for ALL individuals with mitochondrial disease. Together the 2 bus loads of us, visited more than 80 congressional offices and 42 offices in the U.S. Senate. Now as I return home to Texas, it is time to make follow-up calls to all the offices that we visited and ASK again about the Caucus and SenRes 490…. the advocacy continues!


About Empowered Advocacy Pediatric Patient Advocate
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6 Responses to UMDF 2012 Mitochondrial Symposium Day 2- Day on the Hill

  1. Sean Durity says:

    As a mito-dad, I just want to say thank you for advocating for our children (and adults) battling this disease. THANK YOU!

  2. Sean Durity says:

    Oh, and we love Dr. Kendall. I actually did an interview with her last year after the conference. It is here:

  3. Pingback: UMDF 2012 Mitochondrial Symposium Day 3- Family Meetings and Banquet | Taking Baby{food}Steps…

  4. Pingback: UMDF 2012 Mitochondrial Symposium Day 4- Family Meetings and Wrap Up | Taking Baby{food}Steps…

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