By Kim Edgren
9 Mar

We Must Use Our Voices

Monday, March 09, 2015

I was so grateful to be able to attend this year’s Congenital Heart Legislative Conference. It is always a great experience to be around such inspiring individuals, and have the opportunity to meet with our legislators on the Hill.

With Congenital Heart Awareness Week earlier last month, we have heard a lot of the statistics surrounding CHD—but most striking is the lack of funding. How can the No. 1 birth defect—and leading cause of birth defect-related deaths—be so grossly underfunded? A better question is, what are we going to do about it? And that is what the day on the Hill is all about!

As our survival numbers rise, we each have a voice. We must use it.

Nearly 120 people used their voices to share their stories with their elected representatives and ask for much-needed funding: We want continued support for NIH research to prevent, treat and cure CHD; an increase to $10 million in CDC funding for data collection and public health research; and $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program.

This funding is vital to continue making progress with research, tracking our outcomes and assuring effective treatment is available to all. And just as important is making those in power aware we are here… growing in numbers... growing in age…growing in need.

During last year’s visit I was able to have a meeting with Congressman James McGovern. One of our “asks” was to have him join the Congressional Congenital Heart Caucus and he did! This year, in addition to our funding ask, we asked Congressman McGovern to sign the Congenital Heart “Dear Colleague” Letter—and he already has.

My story is one of many success stories directly related to our elected officials hearing from their constituents. It is wonderful to see government working for the people. Your voice matters.

The truth is, it is hard to take time and money away from our daily lives and make the trek to D.C. This year almost didn’t happen for me and honestly, I was almost relieved at the thought of not making it and having a couple days to unwind after a crazy week. But, I am so glad I stuck to the plan, even if I was a little late!

Experiencing the energy and dedication of my two Massachusetts delegates who lobbied with me all day was inspiring, and hearing the stories from our peers as they returned from their visits really makes me appreciate being part of such a supportive and dedicated community. And for everyone who made it to D.C., countless more reached out to their representatives from home!

And that is the beauty of it all. The call to action of “What are you going to do about it?” can be met in many, many ways. Letters, emails, calls, in-district visits. Your voice can be heard at home and in D.C.!


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