“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
I’ve already posted about this on social media and on LDNBS.org but it felt necessary to also include it here because this is a monumental day. Today Pennsylvania became the … Continue reading Act 133 of 2020: Implemented!
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
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
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
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.
South Carolina passed a bill after this image was created, so they will begin testing in the next 1-2 years.
Indiana expects to begin testing in 2020.
Pennsylvania will hopefully be testing by next year. We have a bill in the legislature (HB 730, numbered for Tori’s birthday) that will make screening equal throughout PA, and Krabbe will become mandatory. If you live in Pennsylvania, please contact your state representatives/senators and ask for their support!