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Leadership Update: People Power on Display

Thursday, Mar 14, 2013

What does democracy mean to you? The dictionary tells us that democracy is an ancient Greek word combining the word for people, “demos,” with the word for power, “kratos”—people power. For many of us, regardless of political persuasion, what goes on in Washington can sometimes feel far removed from the wants and needs of actual people. I was reminded of democracy’s origins last week, as I said goodbye to the beautiful country of South Africa. Many of us remember 1994, when South Africans expressed their “people power” by standing in line for days to vote in that country’s first democratic election.

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A Community United: Contact Your Legislators on March 19!

Monday, Mar 11, 2013

On March 19, 2013, hundreds of congenital heart disease (CHD) advocates will be reaching out to their lawmakers to ask for three simple things:

  • Research
  • Data Collection
  • Caucus Participation

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Leadership Update: The Season of Hearts

Tuesday, Feb 12, 2013

Hearts, hearts everywhere, but not one of them looks like what beats in the average chest—let alone what’s hard at work inside congenital heart survivors. This season of hearts presents a tremendous opportunity to get the word out about the real hearts and lives affected by this country’s #1 birth defect: CHD. In honor of CHD Awareness Week, throughout February ACHA invites all congenital heart patients, their families, and healthcare providers to participate in our “I’m #1” campaign. It’s easy – just go to our Facebook Page, click on Photos, then Albums, and download the pictures that are right for you. You can then upload these images onto your own page, and invite your community to “like” them and help spread the word.

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Join ACHA for CHD Awareness Week!

Thursday, Feb 07, 2013

This February, and especially during CHD Awareness Week, the Adult Congenital Heart Association is running a grassroots awareness and public relations campaign during Heart Month to educate the public about CHD—specifically to help educate the world that CHDs are the number one birth defect and that they require lifelong care.

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Leadership Update: Why Sharing Your Story is Important

Tuesday, Jan 15, 2013

“I never knew there was anyone else out there like me.”

If I had a nickel for every time I have heard an adult congenital heart survivor say this, I could fly to Tahiti and back. Every day, congenital heart patients tell us that meeting others who share their struggles transforms their lives. These “meetings” might be in person, through our Facebook page, on our Discussion Forum, or through an ACHA Blog post. Because of the large number of defects, treatments, and health impacts, each member story is unique. Each offers a different window to the wide range of experience involved in having a heart defect.

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Save the Date: Congenital Heart Advocacy Day, March 18-19

Friday, Jan 04, 2013

Join the Adult Congenital Heart Association and Mended Little Hearts for Congenital Heart Advocacy Day 2013 on March 18-19 in Washington, D.C. Your voice matters as we unite to educate our members of Congress about congenital heart disease.

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ACHA Applauds Creation of ACHD Subspecialty Certification

Wednesday, Dec 12, 2012

Last week marked an extraordinary achievement for the congenital heart community—the creation of a new medical subspecialty in adult congenital heart disease by the American Board of Medical Specialties. ACHA first endorsed the creation of a special ACHD training pathway in 2001, in response to the struggles our members face in finding cardiologists capable of caring for their health challenges.

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Leadership Update: Our 2012 Achievements By the Numbers

Tuesday, Dec 11, 2012

As the year draws to a close, it is a good moment to pause and reflect on ACHA’s 2012 achievements. One way to measure our achievements is through the numbers. This year, more than 1,000 new patient and family members joined ACHA, and total ACHA membership passed 10,000. By the end of the year, ACHA’s Member Services Manager and our 41 trained Heart to Heart Ambassadors will have helped more than 600 patients and family members face the challenges of living with congenital heart disease.

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Leadership Update: Weathering Sandy, Giving Thanks

Tuesday, Nov 13, 2012

Thanks so much to all the members who expressed concern about how ACHA fared during Philadelphia’s recent bout with Hurricane Sandy. The city declared a state of emergency October 28th and all Philadelphia businesses, including ACHA, were ordered closed for two days. Although the storm did bring widespread power outages and blocked roads to our area, the damage was much less severe than regions closer to the coast, and things returned to normal quickly. In our neighborhood, Halloween still brought its usual hordes of trick-or-treaters, stepping around the many branches still blocking the sidewalks.

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Webinar Update: Traveling with CHD, Dec. 5

Monday, Nov 12, 2012

ACHA announces its newest webinar, "Traveling with CHD: What the ACHD Patient Needs To Know," presented by Arwa Saidi, MD, on Wednesday, December 5, 2012, from 7-8 p.m. EST. The webinar will cover the types of trips that you can enjoy safely and any specific precautions that you should take. To register, click here.

This webinar was made possible in part by an unrestricted educational grant from Actelion.

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Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.