Wednesday, February 23, 2011

Utah Capitol - Friday, February 25th at 8 a.m.

UPDATE on previous post


HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution has been put on the agenda for
Friday, February 25th - 8 a.m.
25o State Capitol, Utah State Capitol Complex


We are getting further along in the process to have an official Mitochondrial Disease Awareness week in UT during the week we are planning the Energy for Life Walk.

You are invited to attend and show your SUPPORT for HJR35! If you are unable to attend, please take a moment to email the committee members. Contact them in advance of the meeting and ask them to support the resolution. If you have a personal story relating to Mitochondrial Disease, include it. You might even like to include a photo. Remember to stay positive and polite.

Senate Health & Human Services Standing Committee:

"Sen. D. Chris Buttars, Chair" dcbuttars@utahsenate.org,
"Sen. Allen M Christensen" achristensen@utahsenate.org,
"Sen. Patricia W Jones" pjones@utahsenate.org,
"Sen. Mark B Madsen" mmadsen@utahsenate.org,
"Sen. Stuart C. Reid" screid@utahsenate.org,
"Sen. Luz Robles" lrobles@utahsenate.org,


Thanks to everyone for the help, whether it is contacting Legislators or coming up in person. I truly am excited to see the way citizens can come together and have such an influence in our community!

During the House Committee meeting on this Resolution, Sean and Michelle Agnew were able to bring in their 2 year old daughter, Maggie - who has been diagnosed with mito- and share insights of how devastating Mitochondrial Disease can be. The progressive nature of mito is really taking a toll on Maggie. Please keep the Agnew Family in your thoughts and prayers, as increasing support for affected individuals and their families is one purpose for having this Resolution.

If you are looking for another way to be involved, and the legislative process is just too intimidating, consider helping with the SAM project, in honor of Samuel McCluskey who died March 26, 2008, of mitochondrial disease .

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