My new book, A Brighter Blueprint: The Twelve Threads of Effective Advocacy, launches in just three days! Every preorder will receive not only a signed copy, but also a small … Continue reading Free Gift for Preorders!
Tag: Tori
Twenty-One Days to Go
In just three weeks, A Brighter Blueprint: The Twelve Threads of Effective Advocacy will be here! My team helped me create this short promo video – it would be so … Continue reading Twenty-One Days to Go
The Tenth Year: From a Monument to a Map
Ten years. In thirty-one days, on March 27th, we will mark a decade since we said goodbye to Tori. For 3,652 days, I have lived in the “if onlys.” If … Continue reading The Tenth Year: From a Monument to a Map
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
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)
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
Ten Candles, Endless Hope – ONLINE AUCTION Info!
We posted last month about our upcoming fundraiser for KrabbeConnect in Tori’s honor – we’re calling it Ten Candles, Endless Hope because she would have turned TEN this year. Since … Continue reading Ten Candles, Endless Hope – ONLINE AUCTION Info!
Advocacy Never Ends
Update on the boys (and a little venting): Because I’m ever the advocate, I wanted to share/vent about the difficulties we’ve been having with the boys and their hearing and … Continue reading Advocacy Never Ends
Even So, Joy 