For The Record with Erica Barnes, Executive Director, Chloe’s Fight Rare Disease Foundation

Erica began her professional career as a speech-language pathologist in the healthcare setting. Following the death of her daughter, Chloe, in 2010 she co-founded Chloe’s Fight Rare Disease Foundation with her husband Philip. Through her advocacy work she has represented the National Organization for Rare Disorders (NORD) as a Minnesota state ambassador, has provided public testimony at the federal level in support of newborn screening, and frequently speaks at national conferences and contributes to publications focused on rare diseases. She serves on the board of Cure MLD, an international coalition of non-profits focused on finding a cure for metachromatic leukodystrophy (MLD).

In the 2018-19 legislative session Erica lead a 41 member, multi-sector coalition in the state of Minnesota calling for the creation of a rare disease advisory council. Upon successful passage of the legislation, the Chloe Barnes Rare Disease Advisory Council was created within the University of Minnesota Medical School and Erica was hired to direct the Council. The vision of the Council is a Minnesota where every patient diagnosed with a rare disease has access to a timely diagnosis, appropriate care, and an effective treatment. Erica lives in Hopkins, MN with her husband, daughter Eva (13), and son Cade (5).

What does it mean to be a leader?

For me, leadership is about bringing a group of diverse people around a collective vision and figuring out a path or process together to realize that vision. Leaders are the ones with the clarity and focus to keep everyone moving toward the vision when it is tempting to focus on the barriers.

How has the definition of a leader changed through your experience with your foundation?

I used to think that leadership had everything to do with a collection of innate personality qualities that set a person apart as “a leader.” While I certainly still believe that leadership involves cultivating character qualities, I think much more in terms of leadership being the ability to recognize an unmet need in a space and having the willingness to address that need. Leadership for me now is much more of a dynamic process that we can all participate in. Having the vulnerability to put ourselves in challenging positions turns us into leaders. Great, now you don’t have to come to hear me speak… 🙂

What have been some of the most rewarding milestones with the foundation?

By far the most rewarding milestone for the Chloe’s Fight Foundation was when I realized that other rare patient groups were looking to us to help shape and build the rare community in Minnesota. Historically, there has been very little collective consciousness around rare disease patients understanding ourselves as a “rare community.” Chloe’s Fight was able to make that case and that led to the passage of the Rare Disease Advisory Council bill. At the time of the bill’s passage, 41 organizations had signed on. To be able to create that unified voice was very rewarding. 

What are your goals for 2020?

Now that I have been entrusted to lead the MN Rare Disease Advisory Council, my goal is to take all of the ideals that we worked to articulate in the legislative session and actually turn those into measurable outcomes. On a personal level, my goal is to be better at directing all of my energies that can sometimes cause me to be afraid of my own failures at being afraid of the status quo. I want to be more concerned about the continuation of systemic barriers to care for the rare community than I am of my own personal failures in trying to address those barriers.

How do you relax/decompress?

I once read that you know an activity is making you truly happy when you lose all track of time when you are participating in them, so I try to find activities that I can lose myself in, like baking, gardening, and writing very bad poetry. Ok, fine. Organizing my kitchen cupboards is also very relaxing.

What do you enjoy most about the Medical Alley community?

I am in awe of the range of expertise and collegiality in Minnesota that is represented in the Medical Alley community. Minnesota has a reputation of being a place where organizations work together to address persistent problems (such as the unmet needs of the rare community) and it is well deserved.

What is the last great film you watched or the last great book you read?

I just recently finished the book “Symphony for the City of the Dead: Dmitri Shostakovich and the Siege of Leningrad.” If you are not familiar with the story behind Shostakovich’s composing of his Seventh Symphony, it is a fascinating example of the tenacity of the human spirit even in unimaginable circumstances.

Tickets Still Available For Our Next Women in Health Leadership event

With featured guest speaker, Erica Barnes, executive director of Chloe’s Fight Rare Disease Foundation.

More than just a celebration of successful women in Medical Alley, our Women in Health Leadership series gives you the chance to hear the personal journeys of women who have overcome personal and professional challenges to rise to the highest reaches of healthcare. The event is designed to foster a high level of connectivity, which makes for meaningful networking time, great energy, and a spirited Q&A session. Simply put, you will not find a better way to meet influential women in healthcare than by attending these events!

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