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: Make a Difference
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.
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
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)
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
Commonalities and Differences
I have lived in three very different parts of the country. I was raised in rural Northern California, where it’s a mostly conservative area and not incredibly diverse (though there … Continue reading Commonalities and Differences
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
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
Ten Candles, Endless Hope: Tori’s Birthday Benefit to #CureKrabbe
In just six weeks, we will be celebrating Tori’s TENTH birthday! Yes, her birthday is actually July 30th, but we wanted to do something extra special for this milestone year, … Continue reading Ten Candles, Endless Hope: Tori’s Birthday Benefit to #CureKrabbe
Even So, Joy 