Monday, July 16, 2012

MITO advocacy, we need your help!!

Ok, this is where we need everyone help, and I promise it will only takes a couple of minutes, and it will greatly help our efforts toward a cure.
As a result of the Day on the Hill (See previous entry), we are pushing two opportunities for Mito awareness in the US Congress.

·         House of Representative
We asking members of the House to join the newly formed Mitochondrial Caucus formed by Representatives Anna Eshoo (D-14CA) and Tim Murphy (R-18-PA).
See the letter announcing the creating of the Mito Caucus .
And more details on 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.

As of today (07-14-2012), 11 congressmen/women have agreed to be a part of the Mito Caucus, we need everyone help to get many more members in this Caucus. So how can you help? Well, we making it very easy for you, click this link :Join the Mito Caucus letter" and in less than 5 minutes you can have a letter sent to your Congressmen/women

·         Senate
Senator Boxer (D-CA) introduced Senate Resolution 490, we need to have as many co-sponsors as possible on that Resolution so it will get out of committee and will pass in the Senate. I know some of your Senators are Republican and there is no lost love between the Republican party and Senator Boxer, but this is why it is even more crucial to get Republican co –sponsors, this need to be a bipartisan effort, it is not about politics, it is about kids like Jagger dying each day because there is still no cure for Mito diseases. And to answer any monetary concern, this resolution will only re-direct funds to Mito research from within the already approved NIH (National Institute of Health) budget, it will not add one cent to the deficit, so there is really no reason for your senator not to co-sponsor it J
More details 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.

As of today (07-14-2012), the Resolution has 4 co-sponsors (3 Democrats and 1 independent), so we definitely need a few more, so once again, we are making it very easy for you to help, click this link "Co-Sponsor Senate Resolution 490" and in less than 5 minutes you will be able to have a letter sent to your Senators

It would be so great if everyone that reads that blog and all my twitter/Facebook friends could help you, Annett, Jagger and I would really really appreciate.
Thank you in advance, and if you hear anything back from the members of Congress you contact, please let me know!
And thanks to Kristi for the links (Kristi Blog)


  1. Sebo, what do we do after clicking on the link? There were a few different choices on the UMDF page. Do I enter my email below the letter, where it says "Go"? Or I have to sign up for an account with them?

    1. Selwana,
      First of all thanks for taking the time to look into it, we appreciated it.
      So what you do is right under the letter, below the box that say "Sincerely, there is another box, enter your name on there. Then scroll down a bit and it will ask you name, address, etc. that is to insure it goes to the correct member of congress.
      Then go all way down and you can preview or send the letter.
      U also have the option to create an account, but you do not have to do this, it is just in case you want to send more letters at another time, if you create an account you will not have to re-type all your info!!
      Let me know if you have any more questions