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 I (along with our friend, Michelle, who often drives Tori and me places so that I can care for Tori in the back) went to represent Krabbe and other leukodystrophies.

We didn’t know what to expect, exactly – we were told beforehand that there would be networking opportunities and a press conference. So, we prepared a flier about Krabbe and brought Tori’s business cards along.

There were many rare diseases represented, but, of course, it wasn’t even a fraction of all the rare diseases in the world (thousands). There were several speakers, and most of them have rare diseases themselves. Some legislators from the newly formed Rare Disease Caucus spoke as well.

We had the opportunity to meet Representative Kevin Schreiber from York County (he was standing right behind us and started a conversation) and he asked many questions about Krabbe and Tori. He was so kind and talked to her ❤

We also met Senator Jay Costa and saw his press secretary again (we met with her about one month ago).

There are so many rare diseases that it can seem overwhelming. Each one may affect just a few, but together they affect many.

I’m glad we could participate today and tell a few more people about Krabbe.

One of Tori’s “fans” recognized her and came to say hello!

Visiting our state rep’s office to introduce Tori

Group photo of those with a rare disease

Meeting Rep. Schreiber from York County

Meeting Rep. Schreiber from York County

Meeting Rep. Schreiber from York County

Meeting Rep. Schreiber from York County

The new Rare Disease Caucus

Sen. Jay Costa (right) meeting the NORD representative

Thanks to our friend Michelle for taking the photos above! You can see more of her work here.

Here are a few from my phone: