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#ebawareness

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Nicky is getting his knee ready for the Dermatologist to see... #ebawareness #epidermolysisbullosa #teamnicky

These #swikerladies are running the #princesshalfmarathonweekend at #disney for a great cause! You can support the cause by donating using the link in our bio.
#runningprincessaruba #aacr #americanassociationofcancerresearch #teamethan #ebawareness #rundisney

Bidding begins in just a couple hours (noon-10 pm est) as we raise money for Asa, a 6 year old born without 70% of his skin. He faces his excruciating disease with courage and charisma. Read more of his story and bid with your ❤️ on #landocolors fb page. #bidforacause #auctionforasa #ebawareness #handmadeauction #boutique #sugarowldesignquilts #thinkbigger #landocolors

#RareDiseaseDay is coming up next week and we want to put #EpidermolysisBullosa in the spotlight. Do you want to help us raise #EBawareness? Spread the word by hosting a #ButterflyBrunch 🥑🥞🥓🥐🍓 more info on the link in our bio!
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#cureEB #fightEB #rarediseaseday2018 #EB #RDEB #charity #nonprofit #fundraiser #donate

Thank to everyone at Farah Dermatology in Syracuse, NY for becoming our latest business sponsorship, and giving us great skin care products to put on our raffle page! 🦋🚴‍♂️💙🦋
Want to help us with the ride and spread #ebawareness?Maybe buy some wristbands or take part in tons of raffle items at > https://www.thebigrideforeb.com/cool-stuff-for-sale 🦋💙🚴💛🦋
#eb #thebigrideforeb #judethecat #epidermolysisbullosa #ebsucks #whooo #cantwait #needacure #kickingass #letstalk #ebawareness #makingourownwaves
#raredisease #tomtaylor

Bella's Ball 2017

Are you getting excited for broomball on Friday? Make sure you layer up and dress for the weather. Just a reminder that we will have the wine wall again. If you bring a bottle or case of wine you will receive raffle tickets for each bottle donated.......last year folks walked away with many bottles. Also, we're still looking for anyone wanting to donate anything to the silent auction. Canucks or game tickets/memorabilia, gift cards, baskets, jewellery, wine, new clothing are all a hit. Please PM me if you are interesting. Thank you to everyone who has supported us. If you are unable to attend but would like to donate then please visit the DEBRA CANADA website.
http://debracanada.org/events-fund-raising/broomball-event.php

#debracanada #bellasball #butterflychildren #beauoftheball #belleoftheball #grousemountain #ebawareness #broomball #fundraiser #support #epidermolysisbullosa #donate #silentauction #winewall #stopEB #healEB #cureEB #snow #northvancouver #lowermainland #beautifulbc @grousemountain

Reason 25774268853 that I hate EB and am incredibly in awe of my daughter and her strength. I don’t take and post a ton of pictures of her wounds but this was the surprise we got during tonight’s dressing change. This particular placement is new to us, but these are the types of things we face on a regular basis. We had this girl naked this morning (blowouts for life) and this was no where to be seen. That’s how fast they can come and grow. First picture is before we drain and second is after. We’ll need to check it frequently to make sure we cut it large enough to keep draining on its own and doesn’t get infected during the healing process. She has wounds like this on her feet, legs, and neck right now - not to mention whatever could be going on internally. Girl could use a break. We could use a break. But mostly - we could use a cure 🦋 #🤬EB #littlemutant #ebawareness #ebwarrior #islasloane #scrump #cureEB #mamaneedsadrink #islaprobablydoestoo

This is not how we want to start anyone’s day but this little lady needs all your prayers. She has a large blister at the very back of her mouth on the very back of her tongue. We can’t reach it to lance it and she can’t eat. She has been able to pop these on her own so far but this one won’t seem to budge. #🤬EB #weneedacure #ebawareness #ebwarrior #littlemutant #islasloane #scrump

3 months 2 days late...again 🤦🏻‍♀️
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There is just so much to say about this girl 💕 She LOVES to see everything and watch the world. She does not love cuddling 😭😭😭 but she does love to play with us! She loves to try to suck on her gloves...All. The. Time. 🙄 She is way more active and interactive with her toys. She loves to talk with us which is our favorite. She smiles more than we deserve 😍 We continue to just soak in every moment with her and could not be more in love with her. She is the strongest, most incredible little human ❤️ #3months #babygirl #islasloane #ebwarrior #ebawareness #ebbb #littlemutant #scrump

Baby girl, I love you more than life itself. Always know that all you go through everyday, Jesus has you in his hands. We trust in his plan and he will bring peace, love and joy and healing to you. My angel Maeve. 😘😍 #wefighteb #eb #ebawareness Our prayers and love to all who live with and treat and love our eb babies and to your babies as well we pray in Jesus name.

This mornings donation spin class @saratogacyclingstudio was a HUGE success for #ebawareness! Over $335 raised for my cause, our cause and for hope for the future for so many kids and families. After all, hope is larger than life. Even if there is some failure, it’s not okay to not try for that hope 🦋! So much thanks to Angela and everyone at Saratoga Cycling Studio for providing this opportunity, and so many thanks to everyone that took part in the spin class! To say it means the world to me, is a monster understatement!
Even though I was not able to ride this morning 😕, the memory of seeing everyone that participated this am will certainly be in my heart as I ride across the country and back! As “The Big Ride” is now so near, I am beyond emotionally thankful for all the support from so many close friends, along with new friends that have done so much for me along this journey towards my soon to be first peddling from Jacksonville Beach!

Again, THANK YOU!
🦋💙🚴‍♂️💛🦋
TheBigRideforEB.com

The #utv racers are lining up out here at @adventureoffroadpark the rain has stopped!!! #rockracer

The #crawlingforreid giveaway #jeep is here at @adventureoffroadpark today! Come out to the #AOP and check out the #prorockracing race, buy some #cfr gear and some #raffle tickets to win the Jeep!!

Big thanks to @rippsuperchargers for their support and generosity to Reid and our event!!!! Raffle is looking good, don’t miss out!!! Be there on March 17th at @adventureoffroadpark #rippsuperchargers #rippsupercharged

After #ValentinesDay comes a trip to @greatormondst hospital for a check up 🏥 Sohana had OT, echocardiography and dermatology chat, but no blood tests 💉 (Yippee! Says Sohana, she really doesn’t like needles...) Lovely photo taken by Poppy's dad of two of our #EB superheroes.
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#cureEB #EBawareness #genetherapy #fightEB #epidermolysisbullosa

Today is International Childhood Cancer day. Spreading awareness whether it be by creating art or sharing a hashtag (#internationalchildhoodcancerday)
it all matters and it all makes a difference. Awareness is the first step to a bigger solution .
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#spreadawareness #cancerawareness
#ebawareness #epidermolysisbullosa #art #wallart #streetart #childhoodcancer #graffiti #makeartnotwar #kidsmatter

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