Thursday, August 06, 2009

Calling for support on H.R. 3502, Legislation for reasearch/awareness of Mitochondrial Disease

So, Mitochondrial Disease sucks. In fact, although I don't like the word, I'd have to say I hate Mitochondrial Disease. I hate Leigh's Disease specifically. I have watched it devastate families and steal babies from their mother's arms. I am blessed that Marie is doing so well, but my heart breaks at the though of another family walking this road. Luckily, progress is being made.

I am calling you to participate in supporting legislation titled H.R. 3502 which was recently introduced to the House of Representatives. "H.R. 3502 expands existing research efforts at the NIH and fosters greater coordination among NIH Institutes involved with different aspects of mitochondrial research to improve our understanding of mitochondrial disease and dysfunction and to develop treatments for mitochondrial disease."

All the info on this piece of legislation can be found here and there is plenty. From explaining what it is, how it will help, to a form letter all ready to email to you representative it's there. I sent mine yesterday.

Please help me in raising support for H.R. 3502!

I thought this was fascinating, it seems that Mito may be much more common than is believed and it affects even more families than those with rare diseases like ours. I've copied and pasted that info below from the website.


Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:

• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.
• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.
• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.

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The VW's said...

I had no idea that Mitochondrial disease included all of those! My youngest sister was diagnosed with MS a couple of years ago. I wonder if she knows this?

Keep making your voice be heard! I hope that this bill passes!


Anonymous said...

i hope the bill is passed!! sorry for butting in, esp. since you don't even know me, but a lot of those conditions on the list are supp. going to be helped w/ the use of cord blood stem cells one day...maybe cord blood stem cells can one day help mito diseases like leigh's too...