A Year of Enlightening

Every time the year comes to a close, it is a great chance to reflect on all that has taken place. There are so many new people we have been introduced to within the EB community and, of course, many big events we have shared together, the biggest of course being the bi-annual Patient Care Conference (PCC). What a wonderful event that was hosted by DebRA of America and the team at Gaylord Opryland Resort and Convention Center in Nashville this summer.

At this year's PCC, many families got an opportunity to interact with those deeply entrenched in the latest medical research and clinical trials revolving around epidermolysis bullosa treatments and the search for a cure. They also got the chance to meet with others diagnosed with EB and their families. Nothing is more inspiring than finding out we are not alone in our challenges and getting valuable insight as well as practical suggestions about caregiving, food and shopping challenges, and other areas of living with EB. This year's event sought out to educate families, the medical community and others directly impacted by those facing EB, and it certainly succeeded at that.

Once again, we launched our own interactive effort to make more people aware of EB with our annual EB Tweet-a-thon during EB Awareness Week in late October. Hope you were able to take part and share some if not all of our RTs posted hourly for 24 straight hours. If we even educated just a few dozen new people about this rare disease they had never heard of before, then collectively, we helped raise the presence of these families in need of support both from their neighbors and medical communities worldwide.

Education is a powerful tool to make things happen. Each time we take even a few moments to share information with another person or group of people, that shared knowledge holds the power to affect change or compel others to take action. I don't know what resolutions you may be settling in on for the new year, but I do hope one of them is to continue helping to raise EB awareness by whatever means available to you.

Thank you, everybody, for all of your support this year at the blog and in our Facebook and Twitter communities. We look forward to a bright, promising new year with each of you. Best wishes for a safe and happy holiday season.

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