I’ve always been an outspoken person when it comes to standing up for what’s right. I’m a black female in America, growing up I knew there was a lot to stand for. But, to fight and march and walk…not completely necessary. I was very grateful to those trailblazers during the civil rights and women’s movements for breaking down the barriers and creating a formula for us. The groundwork was done, we are just maintaining the foundation and building onto the structure. But when it came to IBD…I found myself having to come out of my comfort zone…a comfort zone I didn’t even realize I had. Well, I had to come out of it and stand up for myself and others. Others being adult patients, pediatric patients, caregivers, spouses, children, friends…they needed a voice too. A voice for what? Awareness, healthcare, research, funding, a cure…a better quality of life.
In March, I had the opportunity to let my voice be heard on Capitol Hill. The Digestive Disease National Coalition had their Public Policy Forum on March 2-3, 2014 and I joined Laura Wingate from CCFA on The Hill. What an AWESOME experience! Unfortunately, because of the snowstorm (the snowstorm that prompted CrazyCreoleMommy Lost in Snow & The Adventures of Laura & Brooke! Posts to Follow), we were unable to meet with the Legislative Aids that were scheduled to meet because no one could get to down to the capitol. However, we were able to hand over materials face to face, so it led to some progress and response when I followed up. So I look forward to making legislative head way in June when Jax and I go back with CCFA’s IBD Day On The Hill. What was amazing and motivating for me, was being able to be in a room full of people with Crohn’s, Colitis, Ostomies, J-Pouches and Celiac taking the time to advocate for themselves and each other. Being sick myself and knowing that these people were in as much pain and more than me, and were out there making sure that IBD & Celiac awareness was on the minds of every representative gearing up for re-election. Since re-election is a big motivator, I know that right now is such a great time to reach out to your local Congressperson & Senator(s) to talk about the legislative issues facing IBD patients.
For instance, did you know that there is a Crohn’s & Colitis Caucus? It’s a Congressional Caucus that is co-chaired by Rep. Ander Crenshaw (R-FL) & Rep. Jim Moran (D-VA) dedicated to legislative issues regarding IBD. Rep. Crenshaw is a parent of a Crohn’s patient, so his compassion for IBD patients is greater than most sympathizers. The Crohn’s & Colitis Caucus works closely with The CCFA to ensure that patient’s needs are being represented properly to The House of Representatives. It’s because of the work of the Crohn’s & Colitis Caucus & Sen. Majority Leader Harry Reid (D-NV) who has presented the Inflammatory Bowel Disease Research and Awareness Act to the Senate Floor several times before S. Res. 199 “A resolution supporting the goals and ideals of Crohn’s and Colitis Awareness Week, December 1-7.” was passed in 2011. It’s because of people like some of the folks I met March 2nd & 3rd, taking the time out of their lives to speak to government leaders about what we need as patients, parents, caregivers, spouses and daughters & sons.
June 11th, CCFA is going back to The Hill. Join us! If you can’t join us, sponsor someone to go (email me and I’ll direct you to someone at CCFA who will help you sponsor a patient). If you can’t do that, sit down and type out a letter to your local Congressperson & Senator(s) and let your voice be heard. If you need a little help, CCFA has a great advocacy kit to help show you how to do it. Jax and I will be going. And I will continue to go and advocate until IBD is a household name with ready information for newly diagnosed patients, until patients have an easier better quality of life, until research funds are comparable to those of most deadly diseases and there is a cure! I guess I’ve found a new full time job!