From Butterfly Brunch to Bond with
Research: NEWS From Sohana Research Fund!

Damian Lewis answers the Vanity Fair Proust Questionnaire.

Vanity Fair: “Which living person do you most admire?”

Damian Lewis: “Sohana Collins. A little girl I know who’s extremely brave.

Have you met Sohana yet?

Sohana Collins, who gives her name to Sohana Research Fund, is a young teenager who was born with recessive dystrophic epidermolysis bullosa (RDEB or EB) which means she lacks the protein that holds her skin together. Kids with EB have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Can you imagine a day where your dressing up takes up to two hours and eating and drinking cause blisters in your mouth and throat? These kids have to deal with this kind of pain every single day.

I may be old enough to know life is not fair, but I still cannot come to terms with the fact that awful conditions happen to children. EB is a VERY serious condition. There is good research being done, and it is the only way to have a world without EB. That is why we need more research and need it NOW.

Sohana Research Fund had its “Bond with Research” event at the Bond-in-Action exhibition at London Film Museum on February 28, 2017, Rare Disease Day. The event featured researchers as well as a very Bond-looking patron talk about the latest research developments and hopes about finding a cure for EB.

source: Sohana Research Fund

Yes, we may not be researchers working to find a cure for this terrible skin condition, but we can still help the bravest girl Damian Lewis has ever known and all other butterfly kids out there in our own little ways. And Sohana Research Fund has just come up with a new FUN idea to raise awareness about EB and funds for research.

Welcome to the Butterfly Brunch Club!

source: Sohana Research Fund

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 Sohana Research Fund. Sign up here, 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!

And it does not end there. The Fund will draw the names of 20 Brunch Club Hosts out of a hat at the end of the year and invite them to a special Brunch Club event in London. The participants will also have a chance to win £200 in John Lewis Vouchers!

Finally, Sohana Research Fund is holding its Silver Butterfly dinner, an evening of fundraising and entertainment, including a silent auction, at Royal Institute of British Architects in London on May 18, 2017. They were able to raise more than £522,000 at the  dinner back in 2015. We keep our fingers crossed that they raise even more this year. The clock is ticking for all Butterfly Kids out there and we should ACT immediately to raise more awareness and funds to help find a cure for EB. That is why Damian invites us to give to Sohana Research Fund for more research!

Since Sohana’s family covers the cost of events, fund-raising as well as the administration services, 100% of donations individuals make to the fund directly go into research projects. You can always securely donate at the fund’s Just Giving page. There is no small gift and every dollar counts!

And please please please SPREAD THE WORD!  Check out Sohana Research Fund Website for more information. Follow them on Twitter and Facebook. Please SHARE the information. Please HELP so we can beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!” together.

source: Sohana Research Fund

All Sohana wants, like all other EB kids out there is a cure for EB. Please watch this video, share it with others and BELIEVE we can help find a cure for EB together! Let’s “give her the strength to fly.” Thank you <3


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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