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Rock The Socks for Makenzie and EB Awareness!

asax3kasax3k Posts: 8
edited July 2016 in The Porch
Greetings!
This is my first post here after some 13 years of lurking. Like many of you, I’ve been following Pearl Jam for longer than that, and thanks to good luck and a very understanding wife, we’ve been able to travel to see shows across the country and world. This level of fanaticism has always been facilitated by the knowledge of how much the band and community does to increase awareness for causes outside of music.

I had read about the Vedders’ work with Epidermolysis Bullosa (EB), the rare genetic disease that results in extremely fragile skin and recurrent blisters, but it hit very close to home five months ago when our cousin had a daughter born with dystrophic EB, a severe form of the disease. Little Makenzie was born without skin on her legs and stayed in intensive care for months after birth (where she charmed every doctor and nurse she met). She is now back home and family and friends are rallying to address her many needs. Painful and intricate bandage changes for all of her limbs can take 3 hours every day, but are required to allow blisters to heal and prevent infections and scarring. Despite this, she remains mighty.

Makenzie’s Mom, Dad and Brother have dedicated themselves to making sure she is not only loved and taken care of, but that she grows up proud of who she is. Because Makenzie would throw bandages off, they began covering her arms and legs with the most adorable socks they could find – and she always rocks those socks like a superstar!

Now we’re hoping to raise awareness for EB and help find a cure for Makenzie and others fighting this disease by asking everyone we know to also “Rock The Socks.” Here’s how it works:

1) Friend Makenzie on Facebook: https://www.facebook.com/makenzie.cadmus
Just your support and encouragement are really appreciated and I dare you not to fall in love with that face!

2) Like the Rock The Socks page: https://www.facebook.com/RockTheSocksMakenzie

3) Get creative with some socks and post the picture on your own page and ask your friends to do the same.

Hopefully this will get around and we can spread the word about EB. Makenzie will keep fighting because we know that there’s a sun around the bend!


Additional links:
Makenzie’s special needs fund: http://www.helpmakenzie.com
EB Research Partnership: https://ebresearch.org
Post edited by asax3k on
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    asax3kasax3k Posts: 8
    edited February 2017
    I hate to be gauche, but I'm going to bump my own thread to hopefully help get a spotlight on EB. I also fixed the links in the original post because apparently I'm old and forgot how the internet works. Your involvement would be greatly appreciated and thanks!!



    Post edited by asax3k on
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    Sorry to bring up this old thread, but we don't give up!

    It's hard to believe but little Makenzie is 1 year old! To celebrate her birthday, we're trying to do something big. Enter #RTS1000.
    The mission of #RTS1000 is to “blow up” Makenzie's Facebook page on her birthday, February 22nd, with ROCK
    THE SOCKS videos and pictures. Our goal is to reach 1000 Individual ROCK THE SOCKS posts to her Facebook page (different pictures posted from different accounts), which we estimate will reach 100,000 people. 

    The goal of ROCK THE SOCKS is EB AWARENESS! Greater knowledge and publicity bring more funds and attention to research, something this disease desperately needs!

    Here’s how to help:
    1) Take your ROCK THE SOCKS picture or video now. You can be as creative or simple as you want – take the socks you have on now, put them on your hands and do a selfie! Create special socks to take pictures in, wear a funny hat or make a sign to hold! Whatever you want to do!

    2) On February 22nd, use your photo or video to create a Facebook post. Tag Makenzie in it using:
    Facebook = Makenzie Cadmus
    Instagram= @RockTheSocksMakenzie
    Twitter= @RockTheSocks4EB

    Please make it public!! Remember the goal is to bring Awareness to EB and reach as many people as we can.

    3) Please use the following hashtags:
    #RTS1000
    #RockTheSocksMakenzie

    Help us help Makenzie and other individuals with EB (Epidermolysis Bullosa)! Let's Rock THOSE SOCKS 1000 times on 2/22/17 and turn thr worst disease you've never heard of into the next disease we cure!
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    mfc2006mfc2006 HTOWN Posts: 37,385
    Very cool! You should also post this in the ACTS sub forum for more exposure.
    I LOVE MUSIC.
    www.cluthelee.com
    www.cluthe.com
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    branscopbranscop Posts: 1,181
    Happy B day Mackenzie!!!
    Rock out with your socks out!!!
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    Thanks guys! So far the campaign is going great, thanks to anyone who participated. Just bumping this one more time before the end of the day or for anyone further west (or in the great northwest). I'll repost in ACTS too!
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