The Big Give is Here: Let’s Give to Cure EB This Holiday Season!

Today is Giving Tuesday! It is a a global day of giving we celebrate on the Tuesday after Thanksgiving and kick off the charitable season! So it’s time to be thankful for all the good stuff in our lives and focus on our holiday giving.

Well, most of you know Damian Lewis is a proud patron of Cure EB.

Sohana Collins is an 18 year old teenager who was born with Recessive Dystropic Epidermolysis Bullosa (RDEB) which means she lacks the protein that holds her skin together. Kids with RDEB 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. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long. Sohana’s parents Sharmila and James Collins founded Cure EB (Formerly Sohana Research Fund) to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition.

Here is what Sohana says about EB.

Here is Damian sending a heartfelt message to support Cure EB on BGC Charity Day last year…

…and raising funds for the Fund on the trading floor on BGC Charity Day this year.

Sharmila, Sohana’s mother and the true hero behind Cure EB, ran not one, not two, but twelve marathons in London this past year to raise awareness about EB and funds for EB research!

Marathon  #1 source: @CureEBOrg

Here’s Damian supporting Sharmila’s super human efforts when she ran her 12th marathon, London Marathon itself to be precise, early October.

“I am extremely proud to be a patron of CureEB. The pain Sohana has to live with daily is unimaginable. Her condition will worsen and we now have a race against the clock to find and fund effective treatment. Sharmila is incredibly driven and relentlessly focused on improving not only her daughter’s life but also those of other children with this terrible condition. She has raised millions of pounds for research into EB, at times single-handedly. It’s hard enough to run one marathon but 12 in a year is extraordinary, particularly when Sharmila works so hard every day to find a cure for EB. I am in awe of her. Please sponsor Sharmila and help change the lives of these children and young people.”

https://www.instagram.com/p/CUkC4LUjgfO/

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.

And here I am kindly inviting you all to give to the fund this holiday season. And even when you cannot afford a donation, there are still many ways to help – just pick one!

Donate to Cure EB: Your Donations Will Be Doubled from 12pm UK time on November 30 until 12pm on December 7!

Collins family covers the cost of events, fund-raising as well as the administration services for Cure EB, so 100% of donations you make to the fund directly go into research projects.

If you want to donate to Cure EB, the best time to do it is between 12 pm UK time November 30 (today!) to 12 pm UK time December 7, because then you can have your donation DOUBLED by generous fund matchers! All you have to do is visit Cure EB page on Big Give UK Christmas Challenge website here and donate securely. I did for the last couple of years and I can vouch for the donation process as short and secure. Please keep in mind that the matching funds could be limited so that the earlier you donate, the more likelier your donation will be doubled!

Buy a Copy of Binky’s Time to Fly

“When Binky turns from caterpillar to butterfly, it’s a disaster! His wings won’t work and poor Binky can’t fly. Luckily, the spiders, silkworms and bees come to his aid. Together they work out how to give Binky a pair of bright, strong wings.”

Written by Sharmila Collins, Sohana’s mother and the true hero behind Cure EB, and illustrated by Carolina Rabel, Binky’s Time to Fly is a wonderful children’s book about empathy, hope, inclusion and helping others.

Get a copy of Binky’s Time To Fly for your kids or the kids around you this holiday season! All proceeds go to Cure EB! You can buy a hardback copy on Cure EB website or a paperback copy on Amazon

Spread the Word!

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

All Sohana and all EB kids out there want for the Holidays is a cure for EB. Let’s give them 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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