We’re past EB Awareness week, but why not make every week EB week? Because it’s time to spread the word about Sohana Research Fund, a small charity working extremely hard to spread awareness and raise funds for research to find a cure for Recessive Dystrophic Epidermolysis Bullosa (RDEB) “Hard to Say, Hell to Live with.”
Sohana is a young teenager who was born with 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.
It’s no secret that I found out about Sohana Research Fund thanks to this “call to arms” Damian Lewis, a proud patron of the fund, did last year inviting us to support the fund in any way we could.
Sohana’s story moved me so much that I have been a follower and a supporter since. And I had the privilege of meeting my young hero Sohana and her wonderful mom, Sharmila, the heart and soul of Sohana Research Fund, in May. Meeting Sohana and getting to know her a little bit better was special; the two of us finding out about the love we share for another hero, Harry Potter, was extra special! But it was also a huge eye opener! Sohana is the most mature young girl I have ever seen: the casual way she talks about her condition, as if it is not a big deal, is incredibly moving. And I can imagine it’s not always easy to keep the positive attitude… Because EB is a progressive disease and there is no cure at the moment. That is why it is urgent we ACT NOW to help find a cure for EB! There are MANY WAYS to HELP for each and every one of us!
1. Take EB Tongue Twister Challenge!
Sohana kicked off the challenge last November telling everyone: “Please help me laugh by taking on the #EB tongue twister challenge here and help the researchers stop the pain of EB!” Can you imagine a better way to raise awareness and funds to beat a disease than through fun and laughter? I CAN’T. So, why not have a go and take the EB Tongue Twister Challenge?
And, it is guaranteed you would be in GREAT company if you took the challenge! Damian Lewis did it! Helen McCrory did it! Benedict Cumberbatch and Sienna Miller did it! Tom Hiddleston did it! Sophie Turner did it! Oh come on, even One Direction did it! Oh yes, yours truly did it, too! So… Just film your tongue twister, nominate friends for a challenge, tweet your film to @SohanaResearchF with hashtag #EBTongueTwister! They will take very good care of it!
For inspiration, see this killer tongue twister by the patron! 🙂
2. Fund-raise for Sohana Research Fund!
Earlier this year, an incredible 19 year old, Tom Davies, became the youngest person to cycle the world and raised more than 50,000 pounds for several charities, one of which was Sohana Research Fund. Hats Off to Tom! It doesn’t only take courage, strength, and determination but also a BIG GOOD HEART to do this and Tom Davies gives me HOPE for humanity!
Yet, let’s admit it, only a handful of people can do what Tom has done! And there should be other things, we, the middle-aged crowd, with day jobs and families, can do to HELP and inspire others to do the same… That’s exactly how I decided to run Bull City Race Fest Half-Marathon and fund-raise for Sohana Research Fund. Well, a half-marathon also takes some training time and at least some strength in the legs but ultimately it is doable…
And there were a few BRILLIANT surprises along the way!
A couple of weeks into my training we got the FANTASTIC news that Sohana received Pride of Britain Teenager of Courage Award! It simply could not have happened to a better person. The way this courageous young girl deals with her condition is a TRUE inspiration! Sohana received her award from David Beckham and also received a signed broom from Rupert Grint (Ron Weasley, anyone?)! HOW COOL IS THAT?
And I was extremely lucky to have the patron bless my vest before the half-marathon 😀 Well… If Damian Lewis knows one thing about me, aside from I am a crazy professor blogging about him, he knows how much I love Brody! And he asks me where I am running the half-marathon: “North Carolina.” He opens his hands to two sides and says: “Where else, right?” “Right! Where else?” North Carolina is Brodyland — Damian filmed Homeland in Charlotte, North Carolina for three years. So, it’s sort of home state for both of us!
But the real sweet thing is to see that sparkle in Damian’s eyes as he talks about Sohana receiving the Pride of Britain award. He is very proud, in his own words, of the bravest girl he knows in the world!
Well… Our great state of North Carolina could not have treated me better on the Race Day: Blue Carolina skies with temps in high 30s / low 40s — ideal conditions for a long run! Besides, the hilly route was scenic as well as exciting. See how HAPPY (and high!) I look as I am crossing the finish line.
I am happy to report I did well in my first ever fund-raising, too! I set a target and exceeded it by more than 30%… And, it’s amazing to see where the money has come from. Most of my close friends, as expected, turned out and supported me all the way, but also people that have never seen me physically or people that I only spent an afternoon with some years ago turned out for me! The most incredible (and biggest) donation came from a lovely couple, whom we have known for years, that lost their 6 year old daughter to a very unfortunate accident last summer. It brought tears to my eyes.
I did my fund-raising completely independent of the blog so only the fans that know me personally knew about it. So, I have a big shout out to my lovely partners JaniaJania and Bookworm as well as lovely friends, Sabrina from Damian-Lewis.com, Maryse, a great fan, and Denise, another great fan and also a wonderful knitting witch, for their kind donations and supporting messages… And also to great friends and fans, Rakel and Tiffany, for supporting me with their sweet messages and tweets — THANK YOU from the bottom of my heart!
Well… If I could do it, you could do it, too! And, it doesn’t need to be a half-marathon. There is always a 5K run or a walk or you can just play to your own strengths and get creative with it! What about a cook-off, a bake sale, or a board game tournament and then donate the proceeds to the cause?
Now… If you are too shy to take the EB Tongue Twister and don’t have the time or energy to fund-raise then you can still HELP!
3. Donate to Sohana Research Fund!
You can always securely donate at the fund’s Just Giving Page. Since the 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 the research projects. The fund has already funded a clinical trial in adults, and now they are actively raising money for a clinical trial in children which they hope to start next year. There is no small gift and every dollar counts!
4. Spread the word!
Please please please SPREAD THE WORD! Follow Sohana Research Fund on Twitter and Facebook and share their tweets and posts! We, Damian Lewis fan pages, do our best to spread the word, but we NEED all of you to HELP us!
Let’s do this! Let’s beat EB together!
