Let’s Raise Awareness for EB on Rare Disease Day!

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.

Sohana Collins is a young teenager who was born with RDEB, a rare disease, meaning 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. That is why Sohana’s parents Sharmila and James Collins founded Sohana Research Fund to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition.

Damian Lewis with Sohana and her mother Sharmila at BGC Charity Day 2014, source: Sohana Research Fund

Now, if you want to HELP the bravest girl Damian has ever known, here is a great opportunity! Tomorrow is Rare Disease Day, a day to raise awareness about rare diseases and the impact they have on patients lives. The primary target of the campaign is the general public; however, it is very important to raise awareness among policy makers, researchers, health professionals and anyone who has an interest in rare diseases. There are many ways to raise awareness – PICK ONE!

Make a Donation to Sohana Research Fund

source: The Guardian

Since the Collins family covers the cost of events, fund-raising as well as the administration services for Sohana Research Fund, 100% of donations individuals make directly go into research projects. We would very kindly invite you to give to the fund. You can always donate securely at the fund’s Just Giving page and even if you cannot afford a donation, there are still many ways to help – just pick one!

We cannot emphasize enough the importance of research to find a cure for EB. I am happy to report this month came with incredibly promising news for EB patients. And, Hassan, a 7 year old boy, is the living proof for why we need more research about EB and why we need it now.

Hassan has been living with EB since the day he was born. When the doctors who treated the young boy in Germany (the family fled the Assad regime in Syria) saw there was nothing else they could do further about his condition, they called Dr. Michele De Luca at University of Modena and Reggia-Emilia in Italy about an experimental treatment. Dr. De Luca, together with his colleague Graziella Pellegrini  collected a square inch of skin from Hassan’s groin (one of the few parts of his body with intact skin) and isolated stem cells. Then they genetically modified these stem cells and created their gene-corrected skin grafts. They transplanted these onto Hassan in the following months, replacing 80% of his old skin.

In a few months, the young boy was discharged from hospital. In a month, he was back in school with strong skin and no need for ointments. Dr. De Luca shares the details with The Atlantic: “He hasn’t developed a single blister. He’s gaining weight. He’s playing sports. He’s got a normal social life.”

I know this all sounds like a miracle. But it is not a miracle. It is science and research bringing Hassan back to a normal life!  Here is a news segment from Sky News about Sohana and the great news about this experimental gene therapy.

While this experimental gene therapy certainly gives a new big hope to EB patients, we need to remember that this particular operation works to renew the external skin, but EB affects the internal organs as well. Thus, even though this is an extraordinary development in finding a cure for EB, 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. Having said that, there are other and fun ways to raise money and awareness about EB.

Organize a Butterfly Brunch

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!

Fund-raise for Sohana Research Fund

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 two years ago. See how HAPPY I look as I cross the finish line.

source: Damianista

But, hey, you do not need to run a half-marathon, and it does not even need to be an organized event! Tiffany, who was registered for a 5K but was not able to make it due to health reasons, did her 5K later on her own and fund-raised for Sohana Research 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, a brunch 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 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.

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

What all Sohana and other EB kids out there want for the Holidays is a cure for EB. Please watch this video, share it with others, and BELIEVE we can help create a world without EB!

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!

Join the conversation!

This site uses Akismet to reduce spam. Learn how your comment data is processed.