Rare Across America- Day 1

Rare Across America- Day 1

Today I had the opportunity to visit our 3rd district Representatives office of Jim Banks. I spoke with his Senior Advisor. What an honor it was to speak with him. He was pleasant and a great listener. He took notes, research some information for me to add to my meeting tomorrow with Senator Todd Young. This advocating is done through Rare Across America.

One of the things we discussed (along with other) was the Illumination event in April. When I told him what is was and named one of the companies who lit up purple he stated "I saw that and wondered what it was". He then went on to say next year try this other place as well (an old train bridge) it is lit all the time with various colors as well. Chris Crabtree is his name and he was awesome. He then asks if there was anything else I needed. I stated I wanted to meet Jim Banks himself. I have been to two of his offices and yet to meet him. He assured me he would make that happen.

Today was a good day! Telling our story is what needs to be done no matter the avenue. In October, if it works out, I will be a human library! One of the things that I have learned is that what it is to be a Patient Advocate. I also have been taking training course through the WEGO Health platform. It has been amazing and I have gained a tremendous amount of knowledge.

Below is my follow-up letter:

Good Afternoon Chris,

It was great meeting with you today and discussing Rare Across America. This is a summary of what we discussed today:

1. Open Act (Orphan Drug Act 1983) H.R. 1223 (2017-2018 of the 115 Congress) now H.R 2430.

2. Obtaining more information from Paola of the RDLA

3. Speaking with Representative Jim Banks to support the Open Act and to join the rare disease caucus.

4. Making arrangements to meet Representative Banks.

Once again it was a pleasure meeting you!

Sincerely,

Regina Gordon

Indiana Patient Ambassador (Foundation for Sarcoidosis Research)

Advocate (Rare Across America)

Founder (Sarcoidosis Fort Wayne Support Group)

Judge (WEGO.com Health Platform)

260.387.2320