Butterfly EB awareness event
Oct. 26th, 2010 06:13 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
goodnightmoonCopied from facebook:
(Also, to up the ante, I am raising funds to get a butterfly tattooed on my arm for EB awareness. I am halfway to my goal of 65 dollars. I will happily accept donations via paypal to loganx@gmail.com, and any amount over -- they couldn't give me an exact price on the tattoo until I come in because it depends on the artist who is there-- will be donated to United Survivors of EB camp.)
A Movement To Spread Awareness For Epidermolysis Bullosa.
Friday, October 29, 2010.
The last week of October is National Epidermolysis Bullosa (EB) Awareness Week. It was legislated by Congress in 2006. It is a time to increase awareness about the condition, to promote the need for a cure and and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease.
...For those of you that don't know, Epidermolysis Bullosa (EB) is a rare skin condition that results in the blistering of the skin from friction. My sister, Mavis, was diagnosed with the condition when she was born in 2005.
This year, will be the first annual 'Refuse To Settle For Anything Less Than Butterflies Movement.' I am starting this Movement in order to raise awareness about the condition. Butterflies are a symbol for the condition because it is said that the skin is as fragile as a butterflies wings. The idea is for those of you who know about the condition to draw a butterfly on your arm or hand. When someone asks you what the butterfly is throughout the day, tell them a little about the condition and then draw a butterfly on them as well. Then they will do the same when someone asks about their butterfly and so on. The whole purpose is to raise awareness and this could easily spread quickly.
Please invite others and spread the awareness!
For more on Epidermolysis Bullosa (EB) please visit the following website: www.debra.org
Also, I want to collect pictures of everyone's butterflies on their arms and hands for next year, if you can email me your photos at ams29@alfred.edu.
Thanks everyone!
Alexis Sharp
(Also, to up the ante, I am raising funds to get a butterfly tattooed on my arm for EB awareness. I am halfway to my goal of 65 dollars. I will happily accept donations via paypal to loganx@gmail.com, and any amount over -- they couldn't give me an exact price on the tattoo until I come in because it depends on the artist who is there-- will be donated to United Survivors of EB camp.)
A Movement To Spread Awareness For Epidermolysis Bullosa.
Friday, October 29, 2010.
The last week of October is National Epidermolysis Bullosa (EB) Awareness Week. It was legislated by Congress in 2006. It is a time to increase awareness about the condition, to promote the need for a cure and and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease.
...For those of you that don't know, Epidermolysis Bullosa (EB) is a rare skin condition that results in the blistering of the skin from friction. My sister, Mavis, was diagnosed with the condition when she was born in 2005.
This year, will be the first annual 'Refuse To Settle For Anything Less Than Butterflies Movement.' I am starting this Movement in order to raise awareness about the condition. Butterflies are a symbol for the condition because it is said that the skin is as fragile as a butterflies wings. The idea is for those of you who know about the condition to draw a butterfly on your arm or hand. When someone asks you what the butterfly is throughout the day, tell them a little about the condition and then draw a butterfly on them as well. Then they will do the same when someone asks about their butterfly and so on. The whole purpose is to raise awareness and this could easily spread quickly.
Please invite others and spread the awareness!
For more on Epidermolysis Bullosa (EB) please visit the following website: www.debra.org
Also, I want to collect pictures of everyone's butterflies on their arms and hands for next year, if you can email me your photos at ams29@alfred.edu.
Thanks everyone!
Alexis Sharp