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: Rare Disease
Advocacy Work is Not for the Faint of Heart
I’ve been doing a lot of writing lately because it is therapeutic during a time of such chaos in our country and in the Rare Disease space. We have experienced … Continue reading Advocacy Work is Not for the Faint of Heart
Op-Ed: Insurers Are Increasing Disparities in Rare Disease
(This is an op-ed that I am hoping will be published in a newspaper soon, but it feels too important to continue to wait so I wanted to publish it … Continue reading Op-Ed: Insurers Are Increasing Disparities in Rare Disease
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
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.
Krabbe Awareness Month: Day Twenty-Nine
Rare diseases aren’t rare as a whole, but each individual disease is considered to be rare.
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 