Tuesday, September 13, 2011

Mitochondrial Disease Awareness Week

September 18th through September 24th is Mitochondrial Disease Awareness Week.  September 17th is the Energy for Life Walkathon in Kansas City.

I have been doing my part to raise awareness as well as money for the United Mitochondrial Disease Foundation.  They use the money raised for research to help find a better treatment, a cure, and to help train doctors about mitochondrial disease since there are so few mito specialists.

I have been working diligently to raise money for our team for the walkathon.  A saying that I always go by is, "You can't bitch about something  if you're not going to do something about it."  I feel that if you have a problem, do something to solve it.  If you don't, you have no room to complain about it.  There's not much I can do about the things I have been going through over the last couple of years.  I have, however, done everything I can do.  I pushed and pushed for a diagnosis when I knew I didn't have one, or the right one.  Now that I have a diagnosis, there isn't much I can do about the way I feel on a daily basis.  There's definitely nothing I can do to cure my disease.  However, there is something I can do to help the people who can find a treatment and/or cure, or other things that help people with mito.

Other than raising money, I am also trying to raise awareness.  No one, including doctors and other medical personnel, knows what mitochondrial disease is.  If a doctor has heard of it, they don't know much about it other than the name.  Everyone knows what a pink ribbon stands for, but how many people know what a green ribbon stands for?  How many people know what mitochondrial disease does to a person?

Because of this, I will have numerous posts over the course of the next week and a half titled "What mitochondrial disease means to me."  It will be just that.  I will be letting all of you in the blogging world know what mitochondrial disease is and how it affects me on a day to day basis.  I'm even pretty sure that a good portion of my family and friends don't even know all of the ways mito affects me.

So tune in over the next couple of weeks and learn a few things about mitochondrial disease.  Please.. if you do anything for me this year, learn what mito is to me.

And one more thing....  This is another reminder about the Energy for Life Walkathon this Saturday, September 17th.  I set my team goal to $5000.  Our team is currently at $2855.  Please help me reach our goal.  Go to Robin Jones' personal donation page and click "Donate" or go to Team CTS page and pick another team member to donate to.  Thanks for your help!


Rachel said...

I'll be reading and keeping up with your posts! I'm not really quite sure what Mitochondrial Disease is. I have Dysautonomia, so that's really where my knowledge is.

Anonymous said...

I believe there is a local fundraiser for mitochondrial disease. "Bowling with Barb". Not sure if I am remembering correctly but thought you might like to know.

Robin said...

Rachel - Thank you for reading, and continuing to read. You know, the majority of my problems are from the dysautonomia aspect of my disease. So you will recognize many of my symptoms as I post them, I'm sure. I know quite a few people who were diagnosed with dysautonomia prior to being diagnosed with mito.

Anonymous - Thanks for the info. I looked it up, but could only find info from the fundraiser in 2009 and 2010. I will continue looking. I hope she didn't stop doing it.