Grateful for These EB Voices, Inspiring for the New Year

This is the time of year when many of us come up with our list of goals for next year – new things we will try and old things we will fix or eliminate altogether in our ongoing effort to improve ourselves. They’re called resolutions but sometimes that word can add pressure to an already difficult mountain to climb.

We thought this month, we’d combine our mission to form new resolutions with our affection for the work that so many wonderful people are doing in the EB community to make a difference. We call them EB voices and throughout the year, commend a group of people for speaking up for the community. This time, we not only thank them for drawing greater attention to what EB is all about, but we also give them kudos for providing another sort of inspiration to those of us looking to making a difference in ourselves, too.

Caroline Provost

For those who are looking to wake up every day a little bit more positive and focus more energy on being a happier person, there’s no greater example than Caroline Provost of Palatine, Illinois. This delightful and upbeat ‘butterfly child’ recently shared her own story with a local newspaper, and though only eight years old, she shares with sincerity and candor about life with EB yet maintained her bubbly and charismatic personality throughout, sharing a lesson that many of us could heed and employ ourselves. Here is the recent story she appeared in so you can meet Caroline for yourself.

Dr. Jim Sears

So often we may tell ourselves that we should take the time to learn more about subjects that would be meaningful for us to know but for which we have little knowledge. The New Year is the perfect time to set a goal to invest more in educating ourselves. We recently shared a link to a feature on the syndicated television show The Doctors in which a licensed pediatrician Dr. Jim Sears acknowledged that while he knew of epidermolysis bullosa, he had never really been exposed to what this truly looked like or meant for a patient diagnosed with it. So he recognized an area for which he needed further education and reached out to a young man, 11-year-old John Hudson Dilgen, to meet him and share with him about his day-to-day life. The television piece is poignant and their connection immediate, as you watch and recognize the doctor’s appreciation and both sadness and shock at what he’s witnessing as part of the boy’s everyday routine. Kudos to Dr. Dilgen to admitting where he needed additional knowledge and being kind enough to share his journey with the television viewing audience. Here is that story featured on The Doctors.

Lynette Argir

Like many of us, Lynette Argir had a goal in mind, but unlike many of us, her commitment outran any doubts she had of tackling them. This past jogger from Chisholm, Minnesota thought she would never run another race again, having gone so far as to compete in a half-marathon several years earlier. But when she learned that she could raise money and awareness for EB families and specifically DebRA of America by taking part in the NYC Marathon in early November, she decided that it was time to start running again. She began training for her first ever marathon in May. She could have let the limited timeframe scare her away or provide her with an excuse, but instead she chose to make her goal a priority, and we can all learn something extremely valuable from that. Click here to read about her journey to making that decision to taking part in this Hibbing Daily Tribune article.