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.
Tag: Advocacy
The Importance of Humility in Advocacy, Communication, and Life
I prefer to write, not be on camera, so I initally wrote out a script (using talk to text) to read to make this video. I know I went off-script … Continue reading The Importance of Humility in Advocacy, Communication, and Life
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
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
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
How Listening to Understand Transformed My Advocacy Efforts
Hi, it’s been a while. I’ve been very busy with Newborn Screening advocacy/travel for LDNBS, where I am now the Director of Advocacy, and I’m still working on my Master’s … Continue reading How Listening to Understand Transformed My Advocacy Efforts
InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
In early March I was interviewed by InvestigateTV after speaking with reporter Joce Sherman on the phone a few months earlier. She came to our home, where I thankfully was … Continue reading InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues
Branding Session with Perigee Photo Co.
My final project for my first grad school class (Strategic Branding) is a personal branding portfolio and I’ve been building that right here on my website. I realized that one … Continue reading Branding Session with Perigee Photo Co.
There are Stories to Tell and Lives to Save
“I know more about Krabbe than I’ll ever know about Collin.” Kevin Cushman My friend, Kevin, made this statement at a recent Krabbe panel in which we both participated and … Continue reading There are Stories to Tell and Lives to Save
Rare Disease Day at the Capitol
Today was an exciting day for Tori (and us). Today those with Rare Diseases in Pennsylvania were recognized and their advocacy efforts were applauded publicly at the Capitol. Tori and … Continue reading Rare Disease Day at the Capitol
Even So, Joy 