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
It’s Newborn Screening Awareness Month
September is both Newborn Screening Awareness Month and Leukodystrophy Awareness Month. I had the privilege of writing two guest posts this year, instead of using my own blog and social media accounts to help reach a new audience.
Each Chapter Shapes the Next
It was an honor to speak to the new class of graduate students in the Speech-Language Pathology Program at Lebanon Valley College today. This is the first time I have … Continue reading Each Chapter Shapes the Next
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
Necessary but Unwanted Conversations
It’s been a heavy few days in our home. For months now, off and on, Isaiah has been asking to talk to baby Tori. To call her. To see her. … Continue reading Necessary but Unwanted Conversations
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)
Ends and Means (a lament)
The end justifies the means. The means justify the end. Justifications that don’t always suffice. Justifications that allow for unsavory actions. Sometimes used in an attempt tojustify the unjustifiable. Love your … Continue reading Ends and Means (a lament)
Being in the spotlight (and proving that partisanship is blinding along the way)
To preface this, I’m genuinely okay. I don’t write any of this for pity; I simply felt that my observation on humanity in the light of extreme partisanship was worth … Continue reading Being in the spotlight (and proving that partisanship is blinding along the way)
If you’re new here…
Welcome! No matter what brought you to my little corner of the Internet, I hope you find something interesting here as you get to know me. Quick facts: If you … Continue reading If you’re new here…
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
Even So, Joy 