Hello jumpers, this is Shane!

 

 

            I’m writing to share (many) updates, along with some new goals for us. For the majority of my years on Earth, we’ve gathered every New Year’s Day to do a delightfully stupid yet kind thing: jump into cold water to raise money for a cure for EB. Every year, I’ve started my year surrounded by the love and support of the best friends I could ask for.

 

Well, at long last, we’ve had a huge success.

 

            Good news first — for several months now, I’ve been enrolled in a trial for the first real treatment for EB, funded in large part by you — a treatment the FDA should approve in February. Called B-VEC, it’s a gel that uses a virus to insert collagen-7 into the top layer of a wound. It’s not a systemic cure — but it’s a huge step toward that. With B-VEC, kids with EB will be able to heal much faster, and prevent new wounds from turning chronic. The light at the end of the tunnel is so bright now. And that’s thanks to your crazy jump, your love, and your donations.

 

            Now, the bad news. Cancer is all but inevitable for older EB patients, and it’s struck me hard this year. In the spring, I was diagnosed with an extremely large and painful tumor on my back, too large to operate on. I have been on grueling monthly immunotherapy treatments, with mixed results. It’s all but eliminated the back tumor, but several more painful and frightening tumors have grown in its place — on my hand, knee, and foot, all Stage 3. It has been a brutal and painful year in every sense.

 

            With your help, we have finally had a breakthrough to ensure the physical health of future kids with EB. That’s incredible. Now, as I fight cancer on multiple fronts, it would mean everything to me if we could devote our attention to the mental and emotional health of these kids. I have started a project at Cincinnati Children’s Hospital called Doggie’s Friends. Inspired by my trusty stuffed animal who has guided and protected me through everything, I want to provide that same comfort to other kids.

 

            Cincinnati Children’s Child Life Team will select children who are enduring special challenges. They will receive their own special friend, along with a special note for parents (attached below), as part of their treatment for the mental and emotional suffering they have to endure. Doggie’s Friends is more important to me than anything, and I hope you will join me in donating at Doggie's Friends.

 

            In fact, I will go one step farther. Despite my cancer, I’ve worked hard at my job this year, and I’ve managed to save some of my earnings. Doggie’s Friends is so important to me that I will personally match all donations up to a total of $10,000.

 

            And so I am asking for whatever donation you can make to make this happen for suffering kids in Doggie’s (and my) name. Every little bit helps.

 

Thank you for everything,

Shane DiGiovanna

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Note for Parents: Here