WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, August 15, 2012

Mitochondrial Disease Awareness Week, just a month away!

Mito Awareness week is coming, and I am facing my normal, "How can I make a difference?" inner argument.

I am not a fundraiser. I am not a salesperson. I am not particularly eloquent, so what can I do to bring awareness? Oh, and did I say I am not rich either? :-)

There are things you can do.

1) Wear green everyday to the office. Someone will get curious and ask! Maybe even a name tag that says, "Ask me why I am wearing green."

2)Post the links to UMDF and MitoAction on your facebook wall. Or to twitter.

3)How about a piece of green ribbon tied to your wheelchair?

4)Take the time to talk to other Mito patients. Hands down, I have learned the most about Mito from other patients, even if you are a mito patient, "awareness" of the many faces of mito is something all of us are still learning. Heck, most of the time we don't know what is coming with our own brand of Mito- sharing among us helps clarify and define this disease. Your story has power.

5) Need a check up? Schedule your yearly physical that week, wear green to the Family Dr. office and talk their ears off! As I call it, do a "data dump" with any new Mito facts you have learned this year.

6)A green lightbulb.

7) Pack a Mito Lunch! cut out a green awareness ribbon out of construction paper and tape it to your lunch bag.. let the kids decorate their lunch kits with printed and cut out pics of Mitochondria,awareness ribbons, the mitoman!

8)Wear a green awareness ribbon pin. Even if no one asks, someone will remember that ribbon and if they see it again, they are more likely to ask about it.

Help a friend with a fundraiser- you can post an announcement on your blog, offer to make print outs, offer to show up and support them. This year we are making ribbon awareness pins- very cheap and easy. I don't even have to hand them out, because I am simply making them for other Mito families that enjoy handing them out.

As patients and families with Mito we are the most important part of the Awareness Week. We all look at the huge breast cancer campaigns and wonder why Mito doesn't have the resources. Fact is, for the last 3 generations breast cancer was talked about and suffered way before any fund raising began- the Awareness of breast cancer was already 30 years in, so way easier to fundraise for a disease the world already knew was devastating. Mito is new. Most folks have never heard of it, don't understand what Mitochondrial disease is, heck, as a Mom to a Mito Patient I really am still clueless- our voices are the most powerful tool to gain awareness. The fact that our Drs. and we as patients only know part of what Mito is, that we are all still learning is a powerful fact to share.

Consider your Mito Awareness week a success if you learn about someone else's mutation. Or their secondary disease processes. OR if you posted on Facebook. You don't have to spend a dime to be an essential part of awareness week. Your voice is priceless this year and for years to come.

Frankly, I think in the old days when the family sat around the table and discussed a family member or a friend who got the dreaded cancer diagnosis was a far more powerful and real form of awareness compared to pink ribbons,informercials, celebrity announcements and fancy dinners and fundraisers. Frankly, I don't listen to what Movie stars are paid to say, and I am not interested it buying a trinket where I have no idea where the money is going- real life, real families, suffering a hideous disease is a far more powerful tool then money at least for now. Without families sharing no one will understand what monster their money is fighting.

Bringing Awareness is different from fundraising, and even more crucial. Whichever you chose to do, or if you do both you made a difference.


Elizabeth said...

Great ideas- G just got his wheelchair delivered an hour ago- off to search for a green ribbon!

Diane said...

That is exciting! I hope you post pic's! It was such a big day here when Abby got her powerchair- now, we are looking for a new manual, her's is done for and she really needs something a bit more custom.

I am glad it is green for a color! Would be hard to add pink or purple ribbons for the handsome little guys wheelchairs! :-)

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