We have a choice to make. We can say “It doesn’t have to be this way” with resignation, or we can say it with a fire of determination. I’m choosing the fire.
Tag: Hope
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.
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
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
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
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)
Op-Ed: Insurers Are Increasing Disparities in Rare Disease
(This is an op-ed that I am hoping will be published in a newspaper soon, but it feels too important to continue to wait so I wanted to publish it … Continue reading Op-Ed: Insurers Are Increasing Disparities in Rare Disease
Perception and Reality
I recently noticed that I have a “three-star” rating for my book. Just one. No review, no explanation. Just a rating of three stars out of five. Out of 95 … Continue reading Perception and Reality
Maybe We Need to Get Out More
Traveling outside of the United States to experience a different culture should be a required activity for American citizens. We live in a bubble here, mostly comfortable, with many feeling … Continue reading Maybe We Need to Get Out More
Even So, Joy 