Friday, March 7, 2014

Well, We Had A Little Talk With The AAD

Last night, as I write this, several of us from around the melanoma community had a phone conference with representatives of the American Academy of Dermatology. They initiated it and invited us...Oops! Let me give a little history to add the context...

We in the melanoma community take the whole month of May as "Melanoma Awareness Month" and we do everything we can to educate, honor, and remember during that month. Black is our color. We wear it, we have a black ribbon. It's who we are. Melanoma literally means "black tumor." BLACK is our color. And we stand by that. And yes. Color matters. Just ask the people of Pink Nation. We want "black" to be seen and understood to mean "melanoma" just like we see "pink" and no longer think of "little girls" but we think of "breast cancer."

The American Academy of Dermatology takes the month of May as "Skin Cancer Awareness" month and designates the first Monday as Melanoma Monday. And last year, they used ORANGE for their color for skin cancer and carried that over on Melanoma Monday. Their slogan was "Spot Orange" and they encouraged their people to wear orange. Their website and Facebook page had pictures of (presumably) dermatologists having parties in orange and we were steamed. "Orange" is simply NOT the appropriate color for any skin cancer and it's especially offensive when it's promoted for melanoma since we HAVE a color and it's BLACK.

Many of us in the melanoma community on Facebook, myself included, posted on their page numerous times asking them to stand with us. To promote black and show us some respect. We did everything we could think of and we were always met with a canned response from them. We thought we got nowhere. They had a FB event that garnered a little under 1700 virtual attendees. WE had one that had a little over 7200 virtual melahomies attending. We have the numbers. Melanoma is our disease. And we wanted our doctors...our dermatologists who are are usual first-line of defense to stand with us and it hurt tremendously to think that they didn't.

Well. It seemed like they weren't listening. BUT THEY WERE! Recently several of us, including Tim Turnham from the Melanoma Research Foundation and Samantha Guild from Aim at Melanoma, were invited to the phone conference mentioned in the first paragraph of this post. The AAD not only listened, they took NOTES! They followed through by making real changes! And they brought those changes to the table just last night...the night of March 6, 2014 when we held our phone conference.

I will be the first to say I was highly skeptical and cynical of their intentions when I received my email invitation. I knew they had their webpage up for Melanoma Monday and while there was some black, there was also orange. I fully anticipated they would tell us what they had done and expect us to rubber stamp their efforts and that would be that. They would have reached out to us and fulfilled their word from last year when they said we would be included this year.

Thank GOD, and I do mean thank GOD! they proved me wrong! Five other attendees have written up last nights meeting and I highly suggest you read their posts to get a full idea of what happened. I am EXCITED!

Read Al Estep's Black Is The New Pink post.

Read Susan Hayes' Jillian's Journey with Melanoma--A Mother's Story post.

Read Timna Understein's Respect the Rays note on Facebook.

Read Rich McDonald's Hotel Melanoma post.

Read Donna Helm Regen's Melanoma Mama post.

We DID it fellow travelers on melanoma road! We stood united last year and we were heard!

I'm not going to rewrite the above perfectly great posts about last night. They covered the bases accurately and fantastically. There's no need for me to put what they say in my own words.

No. What I want to do is highlight a triumph and encourage us all to continue working together and shining our lights, together, on this very dark disease. It can only serve to strengthen us when we stand and work together. Together with the AAD. Together with the MRF. Together with Aim. Together with each other.

Don't lose heart. Even when it seems like no one is listening...they ARE!

WE make a difference!

YOU make a difference!

God is in our midst and with God ALL things are possible.

And "ALL" means ALL!

I'm proud of each and every one of you.

Thank you for sharing your journey with the likes of me.

God bless!

charis