2/3/2014 2:44 PM
By Anne Gammon
ACHA Board of Directors Vice Chair
The deadline to register for this year’s Advocacy Day, which is Feb. 26-27, is in just a few days. If you have never attended, please consider doing so; an empowering and inspirational day awaits.
The first year I attended was in 2009, representing a pediatric organization as our daughter with CHD, Shay, was just 8 years old. For so many years, we had thought of Shay’s life in terms of days and eventually years, but never decades. At first, Advocacy Day was a personal affirmation that our daughter would become an adult. After attending, it was not just about our daughter’s future. It was about the many adults with CHD whose stories shared a theme—loss to care and the resulting adverse health costs. Something had to change.
Advocating for the Congenital Heart Futures Act was both exhausting and exhilarating. But once it passed, why continue attending?
- Funding: To keep and increase funding for CHD issues we must keep communicating with our legislators. If we don’t care enough to push the discussion, why should they fund it?
- Buzz: There are many groups daily advocating for their cause. Annual meetings keep the lines of communication open and can create relationships. Multiple legislative aides either remembered me or another South Carolina constituent from previous phone calls or meetings.
- Community: Advocacy Day is a rare opportunity to join together as a community—adults, parents, medical professionals. I first met two of my biggest inspirations for involvement in ACHA, George Warren and Steve Catoe, at Advocacy Day 2009. You will meet people from all walks of life, each with a unique story, but with a common goal and fight.
I encourage you to look at your calendars to see if you can give of yourself the last few days of Heart Month. To register by this Wednesday, February 5, click here!
Anne Gammon, ACHA's Board of Directors Vice Chair, has been active within the congenital heart community since 2002. She has put her background in writing to work for several non-profit groups. In addition to serving on their boards, she also helped with the formation of two non-profits. After her youngest child was born in 2001 with hypoplastic left heart syndrome, Anne began working with the Congenital Heart Information Network and later with Palmetto Hearts. She participated in her first Advocacy Day in 2009. Hearing the stories of several adult CHD survivors impressed upon her the strong need for the message of lifelong care to reach parents of young CHD patients. Living in Myrtle Beach, South Carolina, Anne and her husband Bill have four children.
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