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Rare Disease Advocacy Is a Constant, Never-ending Opportunity

Recently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from your mind.

I attended an At-Large Meeting for the Cherokee Nation, of which I am a citizen. My thought process for the meeting was to enjoy it and expose loved ones attending with me to some of the cultural activities available at the gathering.

I had no intention or forethought about rare disease advocacy being a topic in the slightest. But boy, would I be proven wrong!

An unexpected rare disease advocacy opportunity

The advocacy opportunity appeared when I ran into an old friend I hadn't seen in years at the meeting. Through some simple small chat, I mentioned I had previously inquired with my At-Large Councilors about the Cherokee Nation providing a proclamation for an awareness week for my rare disease, familial adenomatous polyposis (FAP).

What is FAP Awareness week?

The FAP Awareness Week Proclamation was started in Michigan in 2017 in honor of Carleton Myer's 90th birthday that year. Carleton had FAP and lived to be 96, and 5 of his children inherited FAP through him. To my knowledge, Carleton was the oldest person to live with FAP, especially in the United States.

A person with FAP has a normal life expectancy with the proper monitoring and treatments required for FAP. However, not everyone in the general population lives to 96, especially in the rare disease world. FAP Awareness Week is always the week of June 16, the date of Carleton's birthday.

Previous success with state proclamation approvals

I had been successful for a couple of years in having a state FAP Awareness Week Proclamation approved in Oklahoma. I suddenly had the idea that I should also try to obtain this proclamation from the Cherokee Nation as well.

This endeavor was due to my family's FAP being inherited through my Cherokee lineage. We are uncertain when FAP began in our family; however, as far back as we know, it has all been among family members on our Cherokee side. How perfect for the Cherokee Nation to support FAP awareness for their citizens impacted by FAP!

One introduction led to another

Therefore, when I mentioned this previous inquiry to my friend at our At-Large meeting, he immediately introduced me to one of my present At-Large Councilors to discuss my request directly with him. This led to discussing directly with the Principal Chief, who introduced me to his wife, the First Lady. She is active on the Cherokee Nation's rare disease committee, which helps providers better understand and provide the specialized care rare disease patients need.

I could hardly believe what was transpiring and the incredible opportunities that may come from these simple in-person introductions and conversations!

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Advocacy contact cards

Fortunately, my At-Large Councilor gave me his contact information to discuss my proclamation request further. However, when it came to exchanging information with the First Lady, I couldn't find my advocacy contact cards in my purse!

I felt like I was in a whirlwind of introductions and conversations, and it was even more frustrating that I couldn't quickly find my advocacy card to provide to the First Lady! She was kind enough to let me enter my information into her phone. Still, I felt so disappointed in myself about how unprepared I was and how unprofessional I must have appeared.  

I learned a hard lesson: even if the First Lady didn't view me that way, I was, and still am, harshly viewing myself during this encounter. I try to always be prepared to share my advocacy efforts verbally with others and to be available to answer any questions someone may have.

However, I have not prepared myself for the "elevator pitch" moments that are, in reality, the most common type of chance advocacy moments we encounter.

Have you ever had an advocacy moment? Do you have an "elevator pitch" or any other helpful tools to explain your rare disease to others? Share with us in the comments below!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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