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My Leadership Journey

Over the past twenty years, I have had the opportunity to participate in a handful of free leadership trainings where I learned skills for partnering with policymakers, better understood maternal and child health programming, and committed to serving as an ally in promoting diversity, equity and inclusion. At times, I questioned why I started my leadership behavior journey when my daughter, Brooke, was just two years old and we were in the midst of navigating ongoing hospitalizations and up to fifteen nursing, early intervention, and medical specialty appointments each month! But skip ahead two decades and I can look back and appreciate the value of those experiences in changing the trajectory of my life in multiple ways.

Something that has stuck with me from the first leadership training was sending notes of appreciation to leadership training presenters. This came pretty easy to me since in my family, writing personal thank you notes was an expectation every year to those who sent us birthday and holiday gifts. Who doesn’t like an unexpected shout out or note expressing appreciation?! One of the recipients of my notes was the director of a university center of excellence in developmental disabilities. He kept my contact information and several years later offered me a part-time opportunity to come work with him as a family specialist. Skip ahead twenty years and I am now the associate director of that university center!

Another thing that has stuck with me through all of these leadership trainings is what I liken to being on the dance floor versus being on the balcony overlooking the dance floor. When I am on the dance floor, I am in the midst of supporting Brooke, I am hoping she, her dad and I, and the professionals paid to be in her life are all doing the same dance to the same music. Are we in a rock music mosh pit being tossed around to disco music, oddly waltzing to R&B music or are we all line dancing to the same country song? When I am in a meeting with state policymakers or local directors of disability services, I pop up to the balcony where some of the day to day noise gets quieter and I can look at all the Brookes on the dance floor.

As I aged, I began to look for something different out of a leadership training experience. I want to be a ‘multiplier’ – a garden grower, if you will – of the next generation of families sharing their wisdom and experiences. Through several of the leadership trainings, I really identified with concepts of compassionate leadership behaviors, emotional intelligence, cultural humility, and managing energy (not time). One of the results of my commitment to hone these behaviors in myself was being awarded the national Merle McPherson Family Leadership Award for exemplary contributions to further family/professionals Title V collaboration. It was awesome to stand on the stage with Brooke, who has inspired me every day of her life

Resource Summary
My Leadership Journey


The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement and genetic services.

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