By Cory Jonak, Former Intern & Current Volunteer
Throughout the course of our lives, we all will inevitably experience moments that have lasting impacts on us. While some of these moments are explicit and stand out, others can be more subtle and happen in an instant. However, no matter how small or big these moments, we often times find them shaping the ways we act, think, and how we see ourselves and others.
The reason I interned with the NFED in the summer of 2014, and motives I have to continue volunteering with this incredible foundation, largely stems back to one of the moments I shared with my father many years ago.
He and I had been watching a holiday concert put on by the renowned classical singer Andrea Bocelli who is famously known for being blind. At one point during the show, my father, who had lost his ability to speak above a whisper as a result of his battles with cancer, made a comment on how much he admired this man’s incredible talent. Despite his limitation of being blind, this man had acted upon a unique opportunity to develop a God-given talent into something so awe inspiring.
That particular moment has resonated with me for a long time now. A lesson that I have taken away from it and incorporated into my own life is that if we have a unique opportunity to do something special or make a difference, it would be a shame not to do so..
Having lived with ectodermal dysplasia for more than 20 years and having overcome many of the obstacles and limitations that come with the condition, I now find myself with a unique opportunity of my own. I have the chance to share my experiences and support, with other people living with ectodermal dysplasias who are going through the same things I went through,
I can make a notable difference in their lives the same way that the NFED made a difference in mine. They have always been there for my family and I and it is a very special thing to be able to return the favor.
Now having been a part of both sides of this foundation, it is clear to see the lasting impact this foundation and its volunteers have had not only on my family but on the entire ectodermal dysplasias community. Their efforts cannot be underestimated and it continues to be a great privilege for me and my family to be a part of the NFED in any way we can.
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