Moms on a MISSION: Susan Fiorella, Advocate

As we celebrate this Mother’s Day weekend, HA would like to extend its deepest gratitude to all of the mothers making a difference each and every day to move the Hydrocephalus Association one step closer to a cure.  For the seven days around Mother’s Day, we are profiling a few members that have gone above and far beyond to further our reach.  Please join us in thanking these amazing (S)HEroes in our community!

Susan Fiorella – The Advocate

Susan Fiorella, hydrocephalus advocate, with her son.A fierce advocate.  That’s how many in the community describe Susan Fiorella, VP of Strategic Communications for Kaiser Permanente.  When her son, Jacob, received a diagnosis after experiencing a stroke, she vowed to do everything in her power to get the word out and advocate for greater research funding and support for all patients affected by the condition.  In the early Spring of 2014, Susan boldly shared her story at the annual Heartsong’s Luncheon hosted by Children’s National Medical Center and used this opportunity to educate hospital administrators about the impact of hydrocephalus on both patients and their families.  She then wrote a letter to the CEO requesting that Children’s host a hydrocephalus symposium at their hospital.  She managed to navigate through the red tape and countless road blocks to unite nearly 200 members for the first-ever Hydrocephalus Association Living with Hydrocephalus Education Day at the largest children’s hospital in the area.  The event sparked the Hydrocephalus Association DC Metropolitan Community Network, which will play a significant role in HA’s advocacy efforts.

In the Fall of 2014, she joined other HA Hydrocephalus Action Network members for the 2014 Rally for Medical Research on Capitol Hill, meeting with Members of Congress and their staff to lobby for increased funding to support medical research. Susan again boldly shared her story to the Rally Day participants as part of the advocacy training prior to heading up to the Hill for the meetings. She continued her advocacy work with HA as part of a small, focused taskforce that successfully lobbied to have hydrocephalus included as one of a small handful of conditions eligible for medical research funding through the Department of Defense. Our ability to submit research proposals through the CDMRP opens the door to $247 million research dollars previously not accessible to our research community. #momsonamission