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!
Category: Tori
Five Ways to Support the Launch of “A Brighter Blueprint”!
With “A Brighter Blueprint: The Twelve Threads of Effective Advocacy” officially launching on March 27, many of you have asked how you can help spread the word. Advocacy is all … Continue reading Five Ways to Support the Launch of “A Brighter Blueprint”!
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 helpful if you could share it with people you know!
Reflections on Legacy
“What is a legacy? It’s planting seeds in a garden you never get to see.” – Hamilton (Lin-Manuel Miranda) I ponder this quote from Hamilton often. Lately, I’ve been thinking … Continue reading Reflections on Legacy
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)
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 