It’s been a very long ten days. Ten days ago we weren’t sure if SB983 (our Newborn Screening Legislation) was going to have a fighting chance this session. Ten days … Continue reading SB983 – Moving to the Floor
Category: Take Action
Reflections on my No Facebook Experiment
Yesterday I downloaded the Facebook app after a week of not using it at all. And I’m a little surprised at what I learned. I really didn’t miss it. I … Continue reading Reflections on my No Facebook Experiment
Differences Make Us Better
If you had told me twenty years ago that one of my favorite people now would be a Liberal (gasp!), I would have laughed. I would have told you that … Continue reading Differences Make Us Better
Good Can Come From Bad Neighbors
Sometimes we learn the most from less-than-ideal neighbors. I would know because I’ve had my fair share of neighbors I wished would move away. In our almost ten years of … Continue reading Good Can Come From Bad Neighbors
Embracing the Togetherness
I can’t help but reflect and be amazed at how the Lord prepared our family, mostly through our church, to be home for a month. Over the course of the … Continue reading Embracing the Togetherness
Press Release for SB 983
Senator DiSanto’s office issued a press release today about SB 983 – our Senate companion bill to HB 730. We are thankful that he was willing to help us improve … Continue reading Press Release for SB 983
Explaining the Current Newborn Screening System in Pennsylvania
Below is the text of a document I created and have been distributing to legislators to explain (as simply as possible) the way that Newborn Screening works in Pennsylvania currently … Continue reading Explaining the Current Newborn Screening System in Pennsylvania
From Feelings of Defeat to Knowledge and Hope
I began the day feeling somewhat defeated, feeling as though there is nothing more I can do to help HB730 get to the floor. I had a phone call with … Continue reading From Feelings of Defeat to Knowledge and Hope
On the News
Yesterday, one of our local news stations came to interview us about the giraffes we have been collecting, HB730, and Krabbe. You can see the report here. CBS21 has been … Continue reading On the News
Krabbe Awareness Month: Day Thirty
We hope you’ve learned something new this month, but we also hope that you’ve been moved to take action.
What can you do?
- Write/call your legislators. It only takes a few minutes, and it can make a huge difference.
- Donate to organizations like Hunter’s Hope so that they can continue funding the Leukodystrophy Care Network and supporting affected families.
- Read (and tell others about) my book, Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph. We want Tori’s story to continue to touch lives and it means so much when we hear about others reading it.
Even So, Joy 