Why I Heart This Community

Who doesn't love Valentine's Day? Flowers, romance, candy! This weekend, sweethearts and children alike will be delighting in the holiday and just the same, in our house, I have a hunch there will be plenty of heart stickers and chocolate hearts in high demand. We never tire of fun, sweet holiday traditions like that.










Remember how wonderful it felt as a child to receive a Valentine from a classmate or the little friend who lived next door? What I do appreciate about this time of year is that it urges us to express what we feel about others. Too often we don't let people know how much we appreciate them, so what better time is there for us to 'share the love' too?

I 'heart' the EB community, and it like all communities is dynamic. The makeup of its membership is ever-changing as more and more families are impacted by the disease, but as we grow, I have been touched by the show of compassion and welcoming that other families have shown in trying to educate new families as well as those outside the EB community.

We all come from different backgrounds, belief systems and experiences that have made us who we are and for such a diverse group of people to come together and help one another, it is truly a beautiful thing to witness. I've been right there watching and on some occasions, initiating conversations to begin this important dialogue.

I 'heart' the dedicated people who make up the various EB organizations focused on defined missions, whether it is raising funds for advanced research or better EB treatments, growing public awareness and involvement, lobbying for change to existing insurance or regulatory policies that might challenge EB families financially, or supporting members in the community directly with wound care supplies, clinical or caregiving assistance, or other support resources. We each have our own reasons for being here and none supersedes another. But even with our own objectives as public voices and fundraising leaders, we can operate individually and still remind ourselves of our responsibility to support one another. After all, that supports the EB community and its members are the whole reason we do what we do every day.

I 'heart' the possibilities. There are new developments happening all the time in the clinical labs where smart, forward-thinking scientists are finding new avenues to explore to give EB families hope of a cure or improved treatments. We haven't begun to scratch the surface of what all of us, as separate EB organizations and members of the EB community and their families and friends, can do together but I have faith that somewhere in our missions we will find a way to make our collective message louder and clearer to the rest of the world about EB and the toll it takes on a patient and on his or her family.

I embrace this community for what it has done for me and my family, and for all that I and others can do to support other families. We still have much to learn from each other and so many more ways that we can positively touch each other's lives. And that warms my heart most of all.

Happy Valentine's Day weekend to you.

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