We Have a Dream: Greater EB Awareness












January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.


The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.


We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.


  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.


Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.


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