Sunday, September 25, 2011

What Now?

As Mitochondrial Disease Awareness Week comes to a close, I am left with the very real question of, “What now?”.  I have to be honest and say there is a part of me that’s glad to know the overwhelming reminders will die down (see my last post), but logically know that one week is not enough.  One month isn’t either. 

It’s been amazing to see the efforts being made by so many this month to get the word out….hard, but amazing at the same time. 

The Wish GRANTed Project page on Facebook, started by a friends daughter is a mere 1858 fans away from their goal of 10,000 for this month.  Please visit and help them reach this amazing goal!!  I shared the link to the news piece about this awesome family before.

The regular informative posts on Facebook by so many, the green profile pics, green blogs, awareness ribbons online and in real life, green porch lights…..all of it gets people asking questions and spreads the word about this devastating disease.

But it just cannot end here.  This has to continue, on some level, every day. 

I am working on a few ideas and will share them as soon as I get them to congeal in my brain.

In the meantime, I leave you with the poignant Facebook status of a friend….

“As mitochondrial awareness week draws to an end today, I want to thank everyone for their support! Remember, you may not have to hear about it daily until this time next year, but there are TOO MANY that live it daily. This week alone FOUR mito warriors age 7 months, 4 years, 7 years, and 16 years lost their battle with mitochondrial disease. As many of us were shouting out about AWARENESS & CURE, four families were whispering heartbreaking goodbyes. Please continue to hope & pray for a cure. Thanks again for all your support!”

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