Now, before I go into the details of our meetings, I want to point out that as "Advocacy Chairperson" I am merely a volunteer. I do not get paid or reimbursed for anything.
I bring this up because I want to emphasize how passionate I am about finding a cure and raising more awareness about "inflammatory bowel disease".
Initially, we were to meet with Jennifer from Senator Bob Corker's office, but she emailed me on Thursday night informing me that she was ill and could not make it to our meeting. To her credit, she arranged for Matt Varino, field director for Senator Alexander, to meet with us in her place. She didn't have to do that, but it was a very considerate and professional courtesy on her behalf.
So, Mandy and I arrived early to our meeting place in Union City, TN on Friday morning, greeted our guests and waited for Matt to arrive. I asked Tammy Smith of Martin to attend our meeting. She has a 17 year old son with Crohn's disease. I also invited Rhonda Hornbeak to join us. She has two children with IBD.
While it was important to bring this bill to the senator's attention, it was equally important to have these women tell their stories of how Crohn's and colitis affect their life and the life of their family.
We met with Matt for over an hour and really tried to humanize this disease. To his credit, Matt sat back, listened, asked questions and genuinely seemed interested in what we were telling him.
I told him that I wouldn't be doing my job if I didn't specifically ask for co-sponsorship of the bill. Obviously, he couldn't commit on the senator's behalf, but he did take the materials I supplied and said he would present them to the senator's staff.
From there, Mandy and I drove to Jackson, TN to meet with Brad Thompson, field director for Congressman John Tanner.
This time it was just Mandy and me, so we really tried to personalize my condition and tell my story to Brad.
Brad was very receptive to our description of how IBD has transformed our lives. However, he couldn't definitively tell us that the congressman would co-sponsor the bill.
Again, I presented him with additional materials for Congressman Tanner to look over and he said he would play "Devil's Advocate" for us in order to encourage the congressman to co-sponsor.
As an advocate, you are not only an educator but, essentially, a salesman too. I have to brand the disease and the bill into their minds and have a "call-to-action". (Thanks Don Fitzgibbons!)
I think we're, at the very least, making a small impact. The response we received from both Brad and Matt (representing a democrat and republican, respectively) was encouraging. If nothing else, these staff members went away with new information and were now educated about inflammatory bowel disease...that is never a bad thing!
I will continue to take days off of work, when needed, to meet with staff members or, if I'm lucky enough, congressmen and senators. I will continue to write emails, make phone calls and send in physical letters in support of "The IBD Research and Awareness Act" because I represent the voice for all of those who are unable to stand up. I won't stop until there is a significant awareness campaign in place and proper funding for a cure!
*I have to give special thanks to my wife, Mandy, for attending both meetings with me, taking a day off of work and really making a lot of strong points during our legislative visits.
Keep this grassroots advocacy campaign going! Call, write and email your local congressman and senators! Tell them your story and ask them to co-sponsor this bill.
Have a safe and Happy Thanksgiving. For those IBD patients that are struggling, keep hope alive and be well.
Cheers,
Brent
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