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.
Category: Newborn Screening
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
Believe Us (and join us)
Unless you’ve experienced something personally, you cannot truly fully understand. That’s why empathy, listening to understand, and humility are key elements of humanity. Hearing how a policy – or lack thereof … Continue reading Believe Us (and join us)
Why I’m Running for Derry Township School District Board
Last week, I had the opportunity to speak to the Derry Township School District Board of Directors, and here are my comments: My name is Lesa Brackbill, and I’m running … Continue reading Why I’m Running for Derry Township School District Board
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
2024 in Review: Personal & Advocacy-Related
This year marked my fifth year in advocacy as a career, and it was the most fulfilling year to date. I not only grew personally and professionally, but I made … Continue reading 2024 in Review: Personal & Advocacy-Related
Even So, Joy 