“Start where you are, use what you have, do what you can.”
At the first Women in Health Leadership event of 2020, speaker Erica Barnes used Arthur Ashe’s famous quote as the centerpiece of her talk that wove her personal story in with an inspirational message for the crowd. Erica’s story began with the struggle she had getting her daughter Chloe – for whom Chloe’s Fight Rare Disease Foundation, where Erica is executive director, is named – correctly diagnosed with a rare disease and treated effectively.
Chloe was diagnosed with metachromatic leukodystrophy in 2010 and died from complications later that year, leaving Erica with “a life interrupted.” But that interruption and the overwhelming grief that came with it became her power source and motivation to change the future for rare disease patients and their caregivers. She told the gathered women about the fears she has had to overcome and the unexpected path she has had to chart to begin the foundation, to build a legislative coalition, and now to lead the state’s rare diseases advisory council. All this she has accomplished not in spite of her past, but because she is able to use it as fuel for action.
“Start where you are: start asking questions, start bringing things up, and start before you’re the leader you want to be.”
Erica’s professional story is one of growth and rising to positions of leadership, though it has seldom been comfortable. But by moving forward, using what she has, and doing what she can, rather than waiting for the opportune moment or a formal tap-on-the-shoulder for leadership, she has created a more hopeful future for the 10% of Americans affected by one of the 7,000 rare diseases.
Even now as she has taken the lead of Minnesota’s rare diseases advisory council with the backing of groups like the University of Minnesota and numerous Medical Alley members, she has to balance the pace she wants to go with the real-world limitations and a fear of failure. But that fear, she said, can be fuel as well. “Don’t let the fear of failure make you not try,” she said as her closed her remarks. “Instead of focusing on your failures, focus on the failures of the system” and start making the changes you know are necessary.