Written by: Kat Reiher (CureGRIN volunteer and Lead Ambassador)

Hi, 

My name is Kat Reiher, I am the lead Ambassador for CureGRIN, and I wanted to write about my experience with Rare Across America! 

Rare Across America took place this August and allowed us to speak with our congressperson and senators. 

If you want to learn more, you can click here. This event is held annually. On that page, you can sign up for their newsletter to learn more about other events they do, or be alerted for next year. Some are virtual, some are in person. 

Below is a quick summary of what happened:

A leader asked me if I wanted to share my story or an “ask”. I also could have done neither and just attended! I chose to share my daughter’s story, Abby is 3 with GRIA2. This is what I did for the Senator meetings where there were about eight of us both times. 

The Congressperson meeting was JUST ME and IN PERSON. I was sooo nervous! But thankfully I had done the first virtual senator meeting a few days before. So I just went in there (the staffers of all three politicians were so nice!) and explained I was with CureGRIN participating in Rare Across America. I brought handouts about the recommended asks, but didn’t really discuss them. I told Abby’s story and also asked that they consider a law making habilitative coverage mandatory for federal insurance.

In Maryland, your child can get unlimited PT, OT, etc if they have a genetic disorder, but only if you have private or public insurance in the state. Because we have Federal Employee Health Benefits, we are limited to 75 COMBINED OT, PT, and speech visits a year.

Once the meeting was over, I got to take the picture below of me with a staffer of Rep. Dutch Ruppersburger.

If anyone has questions or If you would like more information on volunteering on the Advocacy Committee with CureGRIN, you can email me at Maryland@curegrin.org!