Wednesday, February 9, 2011

Resolution in Utah Legislature - Your Help Requested

Utah friends (or if you have friends in Utah you can pass this on to)-
I ask you to contact your legislators to ask them to SUPPORT HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution.
(To find your elected officials, go here: http://le.utah.gov/GIS/findDistrict.jsp.)


UPDATE (2/10):
The Resolution has been assigned to a Committee! It is not yet on an agenda, but will be considered by the House Health & Human Services Standing Committee. If you would like to contact these members and ask them to pass HJR35 out with a favorable recommendation, use this email list:
"Rep. Paul Ray, Chair" pray@utah.gov,
"Rep. Evan J. Vickers, Vice Chair" evickers@utah.gov,
"Rep. Ronda Rudd Menlove" rmenlove@utah.gov,
"Rep. Rebecca Chavez-Houck" rchouck@utah.gov,
"Rep. Tim M Cosgrove" tcosgrove@utah.gov,
"Rep. Bradley M Daw" bdaw@utah.gov,
"Rep. Dean Sanpei" dsanpei@utah.gov,
"Rep. Christine F. Watkins" cwatkins@utah.gov,
"Rep. David Clark" dclark@utah.gov




We are still unsure about the cause of death for Dominic and Bridget, but it is believed they died due to an underlying Mitochondrial Disease. It is also thought that this is contributing to the health problems that have resulted in hospitalizations for our other children. The field of mitochondrial science is relatively new, but has evolved quickly. Discovery is happening at a rapid pace, and more understanding about impaired mitochondrial function resulting in Mitochondrial Disease is bringing more testing and treatments.

But the testing is still quite expensive (the latest test we've considered is $15,000 - and NOT covered by health insurance), invasive (the typical recommendation for someone suspected to have a mitochondrial disease is to have a piece of muscle surgically removed from the thigh), and still new enough to be quite inconvenient, with only a handful of labs across the country capable of processing samples and interpreting results. There is yet to be an FDA approved treatment, though there is promising research that may soon lead to this.

Many have never heard of Mitochondrial Disease, but studies are indicating that many diseases we are familiar with - like cancer, diabetes and autism, for example - may actually be attributed to a mitochondrial dysfunction. More research and discovery in mitochondrial science will not only help those with classified Mitochondrial Disease, but has promising hopes of giving us better understanding in other more commonly known health challenges.

We have been working in many ways to increase awareness of the symptoms and affects of Mitochondrial Disease, with hopes this will result in more interest for funding and research to accelerate discovery that will lead to improved testing and treatment. Currently, the Utah Legislature is in session, and has a bill to consider that would designate the first full week in September as Mitochondrial Awareness Week:

http://le.utah.gov/~2011/htmdoc/hbillhtm/hjr035.htm

That is the week which coincides with our efforts to organize an Energy for Life Walkathon, planned to be held on Saturday, September 10, 2011. I hope that you will take time to contact your Representative and Senator and ask them to SUPPORT HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution. To find your elected officials, go here: http://le.utah.gov/GIS/findDistrict.jsp.



Feel free to forward this information and request to anyone in Utah who would also be willing to contact their elected officials. I hope to have more information coming about the Energy for Life walk, if you'd like to be a part of that. Thank you for your time on this matter that is quite personal to us, even though we are still uncertain. We feel that more research and understanding about Mitochondrial Disease will ultimately make finding the right diagnosis for families like ours less difficult, costly, and frustrating.

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