In September, I was told it was “improbable but not impossible” to see SB983 progress because of our many delays (and a global pandemic). I took that as a challenge. … Continue reading Signed by Governor Wolf
Tag: Krabbe
Sweet Relief
This spreadsheet has been part of my daily life for over four years. I meticulously gathered contact info for all 253 elected officials, kept track of committees, when I contacted … Continue reading Sweet Relief
SB983 – PASSED UNANIMOUSLY!
Even just two weeks ago I was seriously questioning the outcome of SB983. I felt so uncertain after it seemingly became a partisan issue in the Human Services committee, and … Continue reading SB983 – PASSED UNANIMOUSLY!
SB983 – Out of House Human Services Committee
I was not adequately prepared for the level of stress and frustration that accompanied today’s proceedings. We knew that the Department of Health had been “shopping around” their amendments and … Continue reading SB983 – Out of House Human Services Committee
SB983 – Moving to the Floor
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
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
Nineteen Months & Twenty-Eight Days
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
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
Pursuing a Companion Bill in the Senate
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
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.
