This week has been a lot. This year has, too. It’s been too much. We’re seeing levels of division that haven’t been seen in decades, and there’s only one way … Continue reading It’s Up to Us
Category: Take Action
Remarks to the Forward Party National Women’s Committee
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 … Continue reading Remarks to the Forward Party National Women’s Committee
Tori’s ELEVENTH Birthday (and how you can help make a difference)
Today is Tori’s ELEVENTH birthday! It goes without saying that we wish she were here with us. Yet, in her absence, we continue to do what we can to support … Continue reading Tori’s ELEVENTH Birthday (and how you can help make a difference)
Congressional Briefing: The Price of Inaction
Today, I had the honor of presenting to the Congressional Rare Disease Caucus along with incredible fellow advocates and experts. The rare disease community has faced considerable setbacks in the … Continue reading Congressional Briefing: The Price of Inaction
Ignorance or Indifference
Is it that you don’t know?Don’t understand?Or is it something more? Are you uninformed?Misinformed?Willfully ignorant? Or is it pride thatkeeps your ears sealed,That implores you to ignoreThose who know more … Continue reading Ignorance or Indifference
Love (and the absence of it)
I’ve been open about my deconstruction of evangelicalism over the past few years. It continues, and in many ways, it has become even clearer as time has passed. The root … Continue reading Love (and the absence of it)
What is “best” for your party may not be what’s best for your country
Sometimes what is “best” for your party is not what is “best” for your country. Sometimes, we must realize that we are wrong and choose to put principle over party. … Continue reading What is “best” for your party may not be what’s best for your country
New Adventure Ahead
I have spent the past ten years advocating in honor of Tori, to build a legacy for her, and I have succeeded. Because of Tori, babies in Pennsylvania are screened … Continue reading New Adventure Ahead
On Medicaid and Disabilities (and Human Value)
Life for people with disabilities is often difficult, and it doesn’t have to be this way. America chooses to keep it this way. While I cannot speak from personal experience … Continue reading On Medicaid and Disabilities (and Human Value)
Advocacy Work is Not for the Faint of Heart
I’ve been doing a lot of writing lately because it is therapeutic during a time of such chaos in our country and in the Rare Disease space. We have experienced … Continue reading Advocacy Work is Not for the Faint of Heart
Even So, Joy 