Do it like Damian Lewis and Raise Awareness for EB!

You all know Damian is the proud patron of Cure EB (formerly Sohana Research Fund), a wonderful charity that works very hard to raise awareness and funds to make the world a better place for everyone living with Epidermolysis Bullosa (EB), a genetic skin blistering condition where the body lacks the protein to hold the skin together.

When we shared the name change information on Twitter a few months ago, the patron has quoted the tweet and said:


Damian has recently hit the trading floor on GFI Charity Day to raise awareness and much needed funds for Cure EB.

And while Axe, ahem, Damian is not a stranger to the trading floor, and is saying “Axe is gonna bring some insider info to the floor to really crank those trades” it seems he got a little help from his little friends, too 🙂

Now, we may not have taken a phone call from Damian asking for donations, or that we may not be researchers working on a cure for this terrible and rare genetic skin condition, we can still help the bravest girl Damian has ever known and all other butterfly kids out there in our own little ways.

Sohana Collins, source: Cure EB Facebook Page

National Epidermolysis Bullosa Awareness Week is a great opportunity to help increase awareness of EB, the impact this “Hard to Say, Hell to Live with” condition has on patients’ lives as well as promote the need for a cure. And there are many ways to help – JUST PICK ONE!

Make a Donation to Cure EB

source: The Guardian

We cannot emphasize enough the importance of research to find a cure for EB. While experimental gene therapies are certainly giving hope to EB patients, we are still not there yet. The clock is ticking and we need more and more research. Thus, donating to the fund is obviously the most direct way to help and there is no small donation.

Since the Collins family covers the cost of events, fund-raising as well as the administration services for Cure EB, 100% of donations individuals make directly go into research projects. So we would very kindly invite you to give to the fund. The easiest way to donate during EB Awareness Week is by text message. You can text CURE10 to 70300 to donate £10 or CURE to 70300 to donate £3. If you want to give more, you can always make a secure donation here. And if you cannot afford a donation, there are still many ways to help!

Join the Butterfly Brunch Club

source: Cure EB

Here is the drill: You set a date and choose a venue and invite a group of friends or colleagues for brunch. You may either charge your guests for tickets or invite them to make a donation to Cure EB. Sign up here to receive your Butterfly Brunch Pack in the mail and you are all set to have your eggs, sip your mimosas and raise awareness about EB and money for research!

At the end of the year, they will draw the names of 20 Brunch Club Hosts out of a hat and invite them to a special Brunch Club event in London. You will also have a chance to win £200 in John Lewis Vouchers!

Fundraise for Cure EB

Even if you are not in the UK to be a part of the Butterfly Brunch network, you can still fund-raise in several different ways! For example, I ran a half-marathon and raised funds for Sohana Research Fund three years ago. See how HAPPY I look as I cross the finish line.

source: Damianista

Cure EB has athletic events as well as fundraisers throughout the year that you can follow and sign up for here. But, hey, you do not need to run a half-marathon, and you do not even need to participate in an organized event! Tiffany, who had registered for a 5K was not able to make it due to health reasons, did her 5K later on her own and fund-raised for the fund. Possibilities are endless!

source: Tiffany Miller Facebook

And if you think you are not athletic enough for a sports event, you can always play to your own strengths and get creative with it! How about organizing a cook-off, a bake sale, or a board game tournament and donate the proceeds to the cause? Any sponsored event could help raise EB awareness as well as generate much needed funds for research.

Spread the Word

And please please please SPREAD THE WORD!  Check out Cure EB website for more information. Follow them on Twitter and Facebook. Your likes, shares, favorites and retweets on social media are essential to raise awareness. Please HELP so we can beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!” together. And, yes Damian, we will!

Damian, with Sohana, sticking his tongue at EB, source: Sohana Research Fund

Author: Damianista

Academic, Traveler, Blogger, Runner, Theatre Lover, Wine Snob, Part-time New Yorker, and Walking Damian Lewis Encyclopedia :D Procrastinated about a fan's diary on Damian Lewis for a while and the rest is history!

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