Tori is mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart Association. Here, she tells us about her first trip to Washington D.C. to advocate.
I had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.
We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart “Dear Colleague” letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.
If you don’t understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD’s treatment and hopefully one day a cure and to better detect those we don’t know have them, like Sterling. Our kids with CHD’s are becoming adults with CHD’s (which is a testament to the research already done!) and there just isn’t a whole lot of data out there for treating them. There also aren’t very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.
I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD’s, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of “lets get this meeting done” turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.
Read the rest of the story, and more from Tori, here.