A New Chapter Begins

If you had asked me three days ago if I would ever go to grad school, I would have said no. I’ve thought about it off and on since I graduated in 2005 but never found a program that felt right.

On Sunday, after a random series of events last week, I came across a degree that fits perfectly: Master of Arts in Strategic Communication. The classes are so applicable to my advocacy work!

Even better, my alma mater, Azusa Pacific University, offers this program!

So, I applied. It was a simple application. I had to write a 750 word essay to describe my long-term goals and how this degree would be useful. This is what I wrote:

In May 2005 I walked across the stage and received my Bachelor of Arts in Political Science from Azusa Pacific University. If you had asked me then where I thought my life was going to go, I could not have imagined the journey ahead. I had great plans for how I thought I should spend my life: I wanted to be the governor of California, I wanted to change the world through the political arena. And yet, that is not exactly what God had in store. In fact, in just four years I would decide to leave politics altogether with little interest in returning.

On February 13, 2015, our six-month old daughter was diagnosed with a terminal genetic disease called Krabbe Leukodystrophy. Her diagnosis changed the trajectory of my life in more ways than one, but the primary change was in calling. I learned that her condition could have been treated had they screened for it at birth through Newborn Screening (NBS) – a public health program that screens newborns for fatal – but treatable – conditions. The state in which she was born – Pennsylvania – did not screen for it, which meant that we were robbed of the opportunity to try to save her life. It was too late.

At that moment, in the midst of devastating grief, my new calling was given to me, and my education and prior experience with lobbying and advocacy made sense: I wasn’t supposed to change the world by being a politician – all of this was simply to prepare me to advocate for conditions like Krabbe to be included on each state’s Newborn Screening panel and to save lives by doing so, in memory of Tori.

My work began here in Pennsylvania. It took six years and three different bills, but my third attempt was a success. I didn’t only seek to add Krabbe to Pennsylvania’s NBS panel but sought other reforms to the NBS program itself. I worked to ensure equal access, equitable treatment, and cost-reduction overall, correcting the inadequacies I observed.

I used my unique position as a rare disease parent, a student of political science, and a willing advocate to affect change. As a result of my efforts, all babies born in Pennsylvania are now screened for 63 conditions (and counting), every hospital screens for the same conditions, and we are in alignment with the federal Recommended Uniform Screening Panel. Most importantly for our family, Pennsylvania has already identified four babies with Krabbe, giving them a chance at life that our daughter did not receive.

Through those six years, I taught myself to advocate effectively as well as learning as much as I could about NBS, public health, and more, and I am now using those hard-earned lessons to equip others. However, there is only so much I can teach myself and I know there is much more to be learned in order to be a well-rounded, knowledgeable advocate. That is why I am applying for the Master of Arts in Strategic Communication program.

I am interested in APU’s program because of my undergraduate experience there, which undoubtedly made me who I am today. I believe the program will help me to grow as a communicator, advocate, and leader. My long-term plan is to continue not only to be an advocate, but to lead and equip others in the process. I want to learn new strategies to engage stakeholders and to communicate more effectively.

Through my current role at the Leukodystrophy Newborn Screening Action Network – a project I co-founded – I have been given opportunities to speak at conferences, publish in a medical journal, be the parent advocate on a subcommittee of the PA NBS Advisory Board, teach fellow parents how to advocate in their state, tell stories of these precious children, and more. I also self-published a book about our journey.

However, I am at a point where further education is necessary to remain relevant and impactful in an ever-changing society. As I looked at the coursework for this program, I noted several classes that directly relate to my advocacy work, and am hopeful that others could be applicable, as well. There is a great deal for me to learn, and I would be honored to be part of APU’s graduate program.

In May 2005 I didn’t even know what Newborn Screening was, and now it’s part of my daily life. I can’t imagine doing anything else with this life God has given to me. And APU can help make that possible.

Tonight I was notified that I was accepted and will begin this summer!

On this day in 2009, a new chapter of my life began when I met Brennan for the first time. And now, on the same day, another new chapter begins. I can’t wait to see where this takes me.

3 thoughts on “A New Chapter Begins

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