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
Sometimes I just don’t know what to say. I’ve had nearly twenty months to prepare and yet I’m still not sure what to write. I’ve felt some self-imposed pressure to … Continue reading Nineteen Months & Twenty-Eight Days
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
As we wrote last week (see post here), we’ve been collecting giraffes since this summer in celebration of Tori turning five in Heaven. As of tonight we had 566 giraffes … Continue reading Hershey Bears’ Teddy Bear Toss Game 2019
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
I had waited nearly a month for today’s meeting, but it was worth the wait. As you know by now (and if you aren’t aware, you can catch up here), … Continue reading Pursuing a Companion Bill in the Senate
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.
Rare diseases aren’t rare as a whole, but each individual disease is considered to be rare.