Monday, March 29, 2010

Will you help me?

If you are one of my family/friends in VA can you do me a favor and help me out, all you need to do is copy the letter below (the second to the last paragraph is personalized, so you might want to change that one), click here to forward an email to Jim Webb. Paste the letter below (that you already coppied into the message and forward it on.....please do this for Ethan.

Senator Webb,

Recently, Senator Barbara Boxer (D-CA) introduced the “Brittany Wilkinson Mitochondrial Disease Research and Treatment Enhancement Act”, also known as S.2858. I am writing to you to ask that you consider cosponsoring support this very important bill. I believe this measure will enable further study of mitochondrial medicine, which presents us with truly cross-cutting research.

Mitochondria are often called the “powerhouses of the cell.” They are specialized compartments within almost every cell and are responsible for producing the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce the energy required for all bodily functions. If the mitochondria fail to produce sufficient energy, the cell will not function properly and organ systems will fail.

Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimer’s disease, Parkinson’s disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process. Medical researchers have already determined that 1 in 4000 children will develop a mitochondrial disease by age 10. They are certain that the actual number is much higher. In fact, a recent study in the UK found that 1 in 200 healthy people carry the mutation that could develop into a mitochondrial disease.

S.2858 directs the National Institutes of Health (NIH) to establish an Office of Mitochondrial Medicine. The newly created office will be directed to improve the coordination of research related to mitochondrial medicine within the institutes at the NIH and with outside researchers. It also calls on the NIH to annually award five grants for multi project research programs related to mitochondrial medicine and five grants annually for integrated, multi project research programs related to mitochondrial medicine. In addition, S.2858 calls on the NIH to establish a “Mitochondrial Medicine Centers for Excellence” to promote interdisciplinary research and training related to mitochondrial medicine. It also calls on the NIH to establish a national registry for the maintenance and sharing for research purposes and creates a biorepository for DNA and tissues collected from patients with mitochondrial disease and dysfunction for research purposes.

As you can see, a greater understanding of mitochondrial function could lead to treatments for a wide range of conditions and potentially help millions of people, but it is also very personal to me.

Senator Boxer named this legislation after Brittany Wilkinson, from Clovis, California. Brittany was an affected teenager who bravely fought against mitochondrial disease while raising awareness. She worked tirelessly as an advocate for legislation that may one day help others affected by mitochondrial disease. Brittany lost her battle against mitochondrial disease on September 6, 2009. She was 18 years old.

My 15 month old son was just diagnosed. There is not a cure is what I am told, would this be good enough if it were your child? I didn't think so.....you can read more about our story here http://lovemy4littlehams.blogspot.com/.

As your constituent, I ask that you to help those affected by mitochondrial disease. I urge you to be part of the cure and become a cosponsor of S.2858


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