Rare Across America- Day 2

Rare Across America- Day 2

Today I had the opportunity to meet with Indiana Senator Todd Young. What a great day! I watched them enter the building and asked the security is that Senator and he stated yes. They took the elevator up. Soon after I was summoned to his office. I walk in and opened up with "so we all late today" Senator and his Adviser roared with laughter. Introductions were made and the conversations started with Senator asking a bit about me. We joshed around for a bit about family and then he ask why was I here. I told I am here on behalf of Rare Across America and am advocating for those who have rare diseases such as myself. I spoke of my condition and gave him a brief history of when it happened and how I am doing today. He apologized that I have to go through so much.

Senator asked what do you want from me. I told him that I would like him to support the Open Act and to also support the Rare Disease Caucus. He stated he will look into all of the information I presented to him and was very interested in knowing more about what the Caucus does. He was pretty well versed on the Open Act. I showed him his scorecard and he stated I see a lot more exes that I do check marks. I told him it is great he is supporting other causes, but I would like for him to support the rare diseases causes as well. He seemed pretty interested in the idea. 

We then discussed my condition again because he and his adviser were very interested in Sarcoidosis. He even asked me where do I go for treatment. Cleveland Clinic was the answer. Is the condition hereditary and what does it affect. Told him about where I believe it came from and what parts of my body it affects. We even discussed the medications I am on now. I told him how I am out of remission and that I am waiting on insurance to approve my remicade infusion treatments. He was dismayed that I have been waiting for almost two months for an approval. With that being said the meeting concluded and we took a couple of photos, shook hands, and went our separate ways.

His adviser stated he will send me updated information and send the photo we took. All-in-all it was a good meeting. I was able to tell my story and ask the Senator to support rare diseases and support the Open Act.