Tuesday, February 22, 2011

On to the Senate Health & Human Services Committee

HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution has been through the House Health & Human Services Committee and passed the House Floor. Now it has been assigned to the Senate Health & Human Services Committee. It is not on an agenda yet, so I'll have to update later about when you can be at the Legislature to show your SUPPORT for HJR35.

Could you 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,

I want to also thank Rep. Ken Sumsion and Sen. Howard Stephenson for being the sponsors of this Resolution. I appreciate their willingness to help move forward a Resolution with such an impact for families in Utah who are affected by this condition. One family in particular, Sean and Michelle Agnew, have even involved Maggie in presenting this bill to the Legislature, giving legislators a glimpse at how devastating Mitochondrial Disease can be. I encourage you to continue to support the Agnew Family, as well as the efforts to have this bill passed during this session.

You may notice that many of our Mito Mates on the sidebar are also facing difficult circumstances related to the progressive disease. There seems little that can be done to really help in such times, except perhaps pray. This is one reason I hope to see this Resolution gain full support of the Legislature, and that it's impact will be to encourage citizens all over our state, and others, to learn about Mitochondrial Disease, work in their community to support those affected, and perhaps even increase the funding for research that will lead to resulting improvements in testing and treatments.

I would like to also mention Andrew Davis, who has been very helpful to keep me informed on the progress of the bill, and given me insights about what each new development means and what to expect as the bill progresses. He is interning for Rep. Biskupski, and even with being so busy has taken time to be concerned about this Resolution and those of us hoping to see it through the legislature before the session ends. Thanks, Andrew!

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