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.

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