Small Steps Mark Big Success

This week, we continue to reach out to others and educate as EB Awareness Week rolls on, concluding Thursday, October 31. For those who are not usually comfortable putting themselves out there in such a visible way to campaign for a cause, even one so close at heart, it may seem a little intimidating. But like many things that we must do for a greater purpose or good, sometimes we just have to step out of our “proverbial” comfort zone and embrace the task at hand.

 

There are big challenges ahead of us in the EB community but as you recently may have read in an interview with DebRA executive director Brett Kopelan, there is also much opportunity and some very exciting things happening within the research realm, for example, that could lead to improved treatments and possibly even a cure in the future. Some great progress has been made by several of the universities and children’s hospitals who are heading up the clinical trials that could be completely pivotal in charting the course of EB in the future.

 

Much like the tasks before us on a day-to-day basis living with EB and caring for someone with EB, the tasks we must embark on during EB Awareness Week may seem daunting, and we may feel sometimes like we’re running uphill with many miles to go. Because of this, if we’re not careful, we can simply write off the outcomes of a single community awareness event or school fundraiser as insignificant in the big picture. But they are not. Far from it. EVERY small step that each of us makes to educate one more person about epidermolysis bullosa contributes to a huge gain in awareness. Our work may be on a smaller scale but it does in fact contribute greatly to the overall impact of organizations like DebRA of America, the Jackson Gabriel Silver Foundation and EBRMF, who continue to find new creative ways to get their messages in front of key decision-makers, influencers and contributors. 

 

So as you finalize those details on an upcoming fundraiser you might be hosting at work or an online campaign that you are planning through one of your social media channels, do not minimize the work you are doing. It is all QUITE significant and each inch of progress does ultimately contribute to miles of progress.

 

If no one has had a moment to break from their own planning to say it to you already, then let us be the first ones to say it — thank you. For all you do to help be a voice in the EB community in whatever capacity you can. It is needed, it is essential and it is heard.

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