Years ago, I discovered the Forward Party and knew it was the place I most belonged.
Tonight, I had the privilege of being featured as a speaker for the Forward Party National Women’s Committee.
This followed my official endorsement from the Pennsylvania Forward Party last week.
Although most of you are familiar with my story, I have prepared the following to explain both why I am running for the School Board and why I chose to become nonpartisan.
I am here tonight because I am running for the school board in our Township as a Forward Independent, but in order for you to understand the significance of this decision, I need to back up a few years.
If you’d told me twenty years ago that one day I’d no longer be a Republican and instead would align with the Forward Party, I wouldn’t have believed you.
At the time, my AOL Instant Messenger name was Governor Lesa, I had just interned for Newt Gingrich in D.C., I was in TIME Magazine as a result of campaigning for George W. Bush. Even as a child, I was interested in politics; I convinced my kindergarten class to vote for George H.W. Bush in a class election because we could all spell his name. It’s all about meeting people where they are, right?
I was comfortable in the system as it was, and as a Republican. I had no reason to think otherwise.
But life, and politics, have a way of changing your mind.
After I moved from California to Pennsylvania, I took a job with a lobbying firm. I quickly realized the political world I’d imagined wasn’t the one I was living in. I left politics entirely in 2009. I didn’t know it yet, but a far more important calling was on the horizon.
In 2014, my husband and I welcomed our first child, a daughter named Victoria. She was beautiful, with big eyes and a head full of hair. Five months later, our world turned upside down when she began experiencing troubling symptoms. After a six-week diagnostic odyssey, on Friday, February 13th, 2015, we were told our six-month-old daughter was dying.
The diagnosis was Krabbe disease, a rare, terminal genetic condition. The neurologist told us that day that if it had been caught at birth through newborn screening, we could have treated it. At the time, Pennsylvania wasn’t one of the only two states that included Krabbe disease on its newborn screening panel. Our daughter’s life, and her potential treatment, were a matter of geography and policy.
Tori died in March 2016 at just twenty months old. Her diagnosis and death ignited a fire in me, and I couldn’t deny that this was always supposed to be my story. I had the education, the experience, and the passion to make an impact. Over the next five years, I worked on three different bills to change Pennsylvania’s newborn screening laws to expand and strengthen our capabilities.
This journey was filled with incredible challenges, and partisanship was the key one.
I was still a Republican when I began my legislative work; the sponsor of my bill was a Democrat. Those conversations with his staff are what began my journey toward nonpartisanship, as I realized we had more in common than I had ever been told.
Our first bill was tabled in committee, so we tried again.
After my second bill was introduced and wasn’t moving through the process like Schoolhouse Rock says it should, I sought advice from the Speaker of the House; his policy advisor told me it was “dead. They don’t want to give a Philly Democrat a win.”
This was September 25, 2019. That was the moment for me—the moment I fully grasped the dangers of extreme partisanship, and left the Republican Party.
The idea that they would rather allow babies to die from treatable conditions than give the “other side” a win was astounding. The political team they represented was more important than the lives of the children they were elected to serve. I no longer recognized the party and what it had become.
Nothing in undergraduate studies or life experience had prepared me for that moment. But what I choose to focus on is that it doesn’t have to be this way. It’s up to us to change the way that politics happen. And maybe we’re the generation that will finally say enough.
All of this was infuriating, but it didn’t stop me. I learned their game and I beat them at it. My third attempt became Act 133 of 2020. I moved that bill from committee to the Governor’s desk in just two months, during a global pandemic, no less. Because of my relentless advocacy with the Newborn Screening advisory board, we began screening for Krabbe disease in May 2021 when the new law went into effect.
Sixty-seven days later, identical twin boys were born in Erie. A week after that, they were diagnosed with Krabbe disease because they were screened for it at birth. They received life-saving treatment and are thriving today. And the best part? They were born on Tori’s birthday.
That is the power of advocacy. That is the redemption it brings to our most challenging circumstances. Preventing other families from enduring our pain is the least I can do as part of my daughter’s legacy.
It is because of our great loss that I advocate in the rare disease space, and now, for our twin boys, who have significant hearing loss and depend on Medicaid for access to audiology. I won’t be afraid to change a law for them either, to ensure access to hearing aids and services if Medicaid funding isn’t restored.
Everything I have experienced over the past ten years has shaped my approach to advocacy, leadership, and life. I prioritize listening, learning, and collaboration. I understand the importance of evidence-based decision-making and strategic communication. I am committed to involving all stakeholders and putting principle over party in all decisions. And I certainly believe in giving credit where it’s due, even if it’s “the other side.”
We will not solve any of the serious problems our country is facing if we cannot have honest dialogue and seek to understand each other.
The reality is that parents of children with special needs not only have to parent differently, but they also have to navigate a system that often puts up barriers at every turn and forces us to become experts in special education law. All a parent wants is to give their child the best chance at a typical life, and sometimes, in our case, that involves changing policy or running for positions on the school board.
We have decision-makers actively choosing to make it difficult to access the very things our children need to thrive, and it’s often in the name of partisanship.
And now with the chaos at the federal level, special education funding is facing uncertainty.
My twins need me to be in the room where decisions that impact them are made. And I know that my journey has prepared me to be a voice for the children with special needs in our community. We must safeguard their access to essential services, regardless of changes in state or federal policies.
I believe in a fair and free education for every child, empowering teachers, and making data-driven decisions, not partisan ones.
I’m running as a Forward Independent – because school boards should have the Forward mentality, not a partisan one.
Thank you.
Even So, Joy 