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Introducing ACHA's Incoming Ambassadors
Tuesday, October 21, 2014

ACHA is pleased to announce and welcome our nine newest Heart to Heart Ambassadors!

These future Ambassadors will help provide information and support to you, our members, beginning January 2015. Our newest Ambassadors went through an extensive application, interview and training process. Their personal experience as a patient or a family member gives them a unique perspective on many issues our members face.


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Celebrating the Life of Dr. Joseph K. Perloff
Friday, August 22, 2014

This letter to the UCLA community was provided for ACHA to share by the Ahmanson/UCLA Adult Congenital Heart Disease Center:

Dear Colleagues,

It is with great sorrow that we report to you that Professor Joseph K. Perloff, the founding Director of the Ahmanson/UCLA Adult Congenital Heart Disease Center, passed away on the morning of August 18, 2014 at his home in Pacific Palisades, California. He was 89.


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Make an Impact: Join Our Board
Monday, June 09, 2014

The Adult Congenital Heart Association (ACHA) is looking for its next generation of leaders to fill critical positions on our national Board of Directors, the elected group of volunteers who support the work of ACHA and provide mission-based leadership and strategic governance. The Nominating Committee needs your help in identifying candidates for the Board!
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ACHA Releases National Conference Brochure
Wednesday, May 21, 2014

With just under four months to go until ACHA's 7th National Conference in Chicago, Sept. 5-7, our planning has kicked into high gear! We hope you will register for our event—Translating Quality of Care into Quality of Life—soon, taking advantage of early registration pricing. Learn all about the conference at www.achaheart.org/2014conference.  
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Announcing ACHA's New Executive Director
Thursday, April 03, 2014

Dear ACHA supporters,

On behalf of the staff and Board of Directors, I am very excited to announce the hiring of our new National Executive Director, Glenn Tringali. Glenn’s experience and success in expanding membership, medical education and member support match ACHA’s important mission to improve and extend the lives of those with congenital heart disease.


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A Community United: Contact Your Legislators on February 27!
Tuesday, February 25, 2014

On February 27, 2014, 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: A Message from our New Board Chair
Tuesday, January 21, 2014

I became a member of the congenital heart disease community 32 years ago when our obstetrician said we needed to go immediately to meet with a cardiologist at Children’s Hospital Colorado. Since then I’ve been a frightened parent, a grateful recipient of highly professional medical advice, a parent in denial regarding the impact of my child’s heart defects, a proud father, a loyal donor, and recipient of the support of ACHA and the adult CHD community.
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ACHA National Conference Planning Team Update
Tuesday, November 19, 2013

We hope you have saved the date for ACHA’s 7th National Conference at the Holiday Inn Chicago Mart Plaza! We look forward to hosting patients, family members, medical providers and researchers from September 5-7, 2014, for this unique opportunity that allows the entire ACHD community to come together to interact, learn and build hope for the future.
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ACHA Announces Interim Director
Wednesday, October 02, 2013

The Adult Congenital Heart Association welcomes new interim executive director Gail Ober, MSW, LSW, to the organization. Gail brings to ACHA extensive experience in designing and leading organizational development and transformations, including growth, alliances and mergers.
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ACHA Leadership Announcement
Tuesday, September 17, 2013

From Amy Verstappen:

It is with both sadness and pride that I write today to announce my departure from my job as ACHA’s President and CEO. My 52-year-old “backwards heart” has made clear that meeting the tremendous time and energy demands of running ACHA is no longer possible. As I make this life change, I am comforted and inspired by the many ACHA members I have watched negotiate increasing cardiac challenges while living lives full of contentment, activity, and satisfaction. I look forward to this next life stage, in which I can continue to advocate for a better future for congenital heart patients, but with fewer hours, less stress, and more relaxation.


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ACHA Announces Medical Fellowship for Specialty Training
Tuesday, September 10, 2013

The Adult Congenital Heart Association (ACHA), a non-profit organization dedicated to improving the long-term health of individuals born with heart defects, announces the creation of the ACHA Actelion Fellowship Award to increase the availability of specialized congenital heart care.

The fellowship, funded by Actelion Pharmaceuticals US, Inc., will offer training awards to two institutions in the United States with a commitment to high-quality adult congenital heart disease (ACHD) care. These awards will be used to provide two years of special training for cardiologists wishing to specialize in caring for adults with CHD.


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Leadership Update: Addressing the Crisis in Access to ACHD Care
Wednesday, August 14, 2013

Since 1998, ACHA has spoken out about the crisis in access to ACHD care. Although there are more than 3,000 pediatric cardiologists nationwide, there are currently no more than 100 specially-trained ACHD cardiologists, despite the fact that care guidelines jointly published by the American College of Cardiology and the American Heart Association state that every person born with complex congenital heart disease should receive lifelong care from CHD specialists. Most survivors of complex congenital heart disease have either dropped from cardiac care or are being cared for by cardiologists without training in their special needs.
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Leadership Update: It's All About Our Volunteers
Wednesday, July 17, 2013

Despite the heat, this summer ACHA volunteers all over the country are working hard to make a better future for every person born with a heart defect. ACHA volunteers come in all shapes and sizes, with a wide variety of passions and skills. Some patients and their families serve as Heart to Heart Ambassadors, reaching out personally to assist individuals struggling with CHD. Some speak out in their communities to patients, families, lawmakers, and the press, getting the word out about the unmet needs of CHD survivors. Thousands of volunteers around the country participate in Congenital Heart Walks, whether by serving as chairs, team leaders, or by walking to show their support. In addition to those personally affected by CHD, many healthcare professionals also volunteer, as advocates, medical reviewers, researchers, community leaders, and members of our Medical Advisory Board. Virtually everything ACHA does relies on the generosity of our volunteer community.
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Updated Seventh Edition ACHD Travel Directory Now Available
Wednesday, June 26, 2013

It's that time of year—we recently released our newly updated Seventh Edition ACHD Travel Directory.

The directories are free for ACHA members! If you would like one of these resources for your personal use, simply e-mail orders@achaheart.org with your name and mailing address. For a printer-friendly PDF, click here.


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Leadership Update: Announcing our 2012 Annual Report
Wednesday, June 19, 2013

In the last few weeks, I have had the pleasure of spending time with ACHA’s supporters at events in New York, Portland, Long Island, and Chicago. At every venue, ACHA members want to know the same three things: How is ACHA benefiting the patients and families we serve? What specific actions is ACHA taking to help CHD patients live longer, healthier lives? And finally, how is ACHA making sure that it uses funds responsibly, effectively, and efficiently so that every donation has maximum positive impact for the congenital heart community?
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Leadership Update: What Does it Mean to Live With CHD?
Tuesday, May 21, 2013

What does it mean to live with congenital heart disease? This is a question that ACHA members answer every day. There are more than a million answers to this question, since there are now over one million adults living with CHD, each one navigating their unique journey living with their heart.
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Remembering George Warren, ACHA Board Member
Thursday, May 09, 2013

The ACHA community was deeply saddened by the loss of longtime ACHA board member Dr. George H. Warren on April 29, 2013. George was born in 1947 with tetralogy of Fallot, and underwent heart surgery in 1955 and 1964 for his defect. He graduated from Harvard College in 1969, and received his MD from Temple Medical School in 1975. For more than 30 years he worked as a pathologist at the University of Colorado and the Rose Medical Center.
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Local News Feature on ACHD Highlights ACHA
Friday, May 03, 2013

A recent news story on Philadelphia's 6ABC Action News, "Treating Adult Congenital Heart Disease," featured ACHA and President/CEO Amy Verstappen's story.
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Leadership Update: We're Springing Up All Over the Country!
Wednesday, April 17, 2013

Spring has sprung here at ACHA, and in the next few months, ACHA will be springing up all over the country! A key strategic goal for 2013 was to strengthen ACHA’s regional engagement and impact. Our first 2013 regional event, co-sponsored by the Chicago Adult Congenital Heart Network, kicked off in Chicago on March 21, and brought together more than 30 patients, family members, and ACHD providers. Our next two regional events are planned for June 6 in Los Angeles and June 8 in Portland, OR. Each will offer a chance to meet ACHA staff and Ambassadors, learn more about ACHA and congenital heart issues, and connect with other heart defect survivors and their families. Click here for more information about ACHA regional events
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Leadership Update: People Power on Display
Thursday, March 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, March 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, February 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, February 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, January 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, January 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, December 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, December 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, November 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, November 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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Update: ACHA Office is Open
Wednesday, October 31, 2012

The ACHA office has reopened. Thank you for your patience during our closure.
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Hurricane Sandy Update: ACHA Office is Closed
Sunday, October 28, 2012

Due to Hurricane Sandy, the ACHA office is currently closed. We will provide an update when we reopen.


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Webinar Update: Managing and Treating Heart Failure in the ACHD Patient, Nov. 15
Monday, October 22, 2012

ACHA announces its newest webinar, "It's All in the Pump: Managing and Treating Heart Failure in the ACHD Patient," presented by Karen Stout, MD, on Thursday, November 15, 2012, from 7-8 p.m. EST. The webinar will cover which medications and devices are options for treating heart failure and advanced heart failure in adults with CHD. To register, click here.

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


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Leadership Update: Our Vision of a Long, Healthy Life Unaffected by CHD
Tuesday, October 16, 2012

What do you see when you look into the future? At ACHA, we see a time when every person born with congenital heart defects lives a long, healthy life unaffected by congenital heart disease. This fall, ACHA’s Board and staff came together to review progress in achieving our strategic plan, our blueprint for progress towards a better, brighter future for congenital heart patients.
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Webinar Update: Adult Congenital Heart Disease and Dental Issues, Oct. 16
Tuesday, October 09, 2012

ACHA announces its newest webinar, "Adult Congenital Heart Disease and Dental Issues: What’s up with Preventive Antibiotics?" presented by Disty Pearson, PA-C, on Tuesday, October 16, 2012, from 7-8 p.m. EDT. The webinar will cover why the dental guidelines changed and what you, as an adult with congenital heart disease, can do to maintain excellent oral health and why this is an important part of your care as a ACHD patient. To register, click here.

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


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Leadership Update: CHD Prevalence and Impact
Thursday, September 20, 2012

As I write this letter, many of ACHA’s neighbors in Philadelphia are gathering to celebrate Rosh Hashanah, the Jewish New Year. This celebration of new beginnings is also being felt here at ACHA’s office, as September brings an exciting new beginning for the congenital heart community. Last week, the Centers for Disease Control and Prevention (CDC) awarded three grants to fund the first-ever efforts to identify the prevalence and impact of congenital heart disease (CHD) among U.S. teens and adults. Using a blinded, merit-based selection process, the CDC selected researchers in three locations—the New York State Department of Health, Emory University, and the Massachusetts Department of Public Health—to pilot data-gathering activities in teens and adults with CHD.
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ACHA’s Advocacy Efforts Pay Off: CDC Announces CHD Surveillance Funding
Tuesday, September 04, 2012

As a result of ACHA's significant and ongoing advocacy efforts, the first-of-its-kind funding for adult congenital heart disease surveillance has been awarded through the Centers for Disease Control and Prevention (CDC).

The Congenital Heart Futures Act was passed as an amendment to the Affordable Care Act in 2010. In December 2011, $2 million was appropriated to the CDC for surveillance of CHD across the lifespan.


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Wall Street Journal Publishes Story on Congenital Heart Care for Adults
Wednesday, August 22, 2012

The Wall Street Journal recently published an article, "Facing Lifesaving Heart Surgery, Twice," about people with congenital heart disease who had surgery as babies or children and are learning later in life they need further surgery. The article written by Ron Winslow, which includes a quote from ACHA President/CEO Amy Verstappen, uses stories from people around the country to emphasize the importance of CHD care for adults.

Read the article and watch the accompanying video by clicking here.


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Leadership Update: From the ACHA Board of Directors
Tuesday, August 14, 2012

I hope everyone has been having a good summer. It’s hard to believe this is August already! Of course, this means that ACHA’s Board of Directors just held our annual election. We are very pleased to welcome John Fernie and Sean McCarthy as the newest members. I am sure they will be fantastic additions to our leadership team.

Serving on the Board for ACHA has been a great honor for me. The role of the Board is to support the leadership and staff in defining and pursuing a strategic vision for ACHA, while also ensuring that we can develop the resources to meet these goals. This means that a big part of our job is fundraising. Another part of our job is governance—that is, making sure we meet all the requirements of a responsibly run non-profit. We also provide input and insight into the programs and services that ACHA provides, and the projects we get involved in.


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Leadership Update: Speak Up for CHD
Tuesday, July 17, 2012

As the national summer heat wave continues, it is hard for many of us to think about anything other than staying cool. But despite the heat, summer is the time for one of the most important things you can do to speak up for CHD—in-district visits. During August, ACHA members around the country will be sitting down with their national lawmakers at their home offices to let them know how important it is to sustain and increase government investment in CHD research and health surveillance throughout the lifespan. Think talking to your lawmakers and their staff won’t make a difference? Think again—it was the efforts of CHD patients, family members, and healthcare providers that resulted in the first-ever targeted federal funding for congenital heart public health efforts in 2012.
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Leadership Update: Announcing our 2011 Annual Report
Wednesday, June 20, 2012

In a few days it will be the first day of summer, which here in Philadelphia means the sound of kids jumping through sprinklers, the smell of barbecue, and that lazy feeling that comes with hot, humid days. But at ACHA we will be turning up the air conditioners and staying hard at work on all our exciting summer initiatives. One of our biggest recent achievements is the publication of our 2011 Annual Report, designed by ACHA Heart to Heart Ambassador Karen Psolka.
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Webinar Update: Social Security Disability and the Compassionate Allowance Program in the Adult Congenital Heart Community, June 20
Wednesday, May 30, 2012

ACHA announces its newest webinar, "Social Security Disability and the Compassionate Allowance Program in the Adult Congenital Heart Community," presented by Jamillah Jackson on Wednesday, June 20, 2012, from 12-1 p.m. EDT. The webinar will cover the difference in Social Security Disability (SSDI) and Social Security Insurance (SSI), the seven CHD diagnoses added to the Compassionate Allowance Initiative (CAL) initiative in July 2011, and much more. To register, click here.

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


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Share Your Memento with ACHA!
Tuesday, May 22, 2012

Do you have an object that has come to mean something very special to you throughout the ups and downs of having CHD? A favorite stuffed animal, toy, or other knick-knack that you’ve kept around to remind you of where you’ve been and how far you’ve come?

Share a picture of this memento with ACHA! We are looking for members to submit a picture of your keepsake along with a few sentences about why it’s so meaningful to you. We’ll share photos and stories on our Facebook page!


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Leadership Update: How to Use Your Passion for CHD
Tuesday, May 15, 2012

Azaleas in bloom, pollen in the air, and our Congenital Heart Walk around the corner—it must be May in Philadelphia! Over the past two years, I have had the pleasure of attending Congenital Heart Walks all over the country. Whether in Oakland or Ohio, Congenital Heart Walk attendees share remarkable qualities.
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Leadership Update: New Video Premiere
Tuesday, April 17, 2012

Last week ACHA celebrated an extraordinary milestone: A Centers for Disease Control and Prevention (CDC) announcement of a new grant program funding public heath surveillance activities for teens and adults with CHD.
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CDC Announces Plans for $2 Million in CHD Surveillance Funding
Wednesday, April 11, 2012

ACHA is excited to announce another step in the right direction!

As you know, the 2012 budget that was passed in December 2011 included $2 million in funding to the Centers for Disease Control and Prevention (CDC) for congenital heart disease (CHD) surveillance. On Monday, April 9, the CDC announced plans to use that money!


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Have a Question for ACHA? Ask Captain Cardio!
Tuesday, April 10, 2012

Have a question you’ve always wanted to ask ACHA? If so, you can participate in a new feature and “Ask Captain Cardio” your question! Simply e-mail your question—any question—to CaptainCardio@achaheart.org, and we will choose questions and answers to publish in our monthly e-newsletters.
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Webinar Update: Living with Truncus Arteriosus, April 17
Wednesday, March 28, 2012

ACHA announces its newest webinar, "Living with Truncus Arteriosus," presented by Mike McConnell, MD, on Tuesday, April 17, 2012, from 7-8 p.m. EDT. The webinar will cover what it means to have TA and what surgical options are available, as well as what issues to look for in adulthood. Attendees will also learn how to lead as productive a life as possible. To register, click here.

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


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Results: The Meil Family Foundation Valentine Challenge
Tuesday, March 13, 2012

This year, ACHA set an ambitious goal to raise $40,000 in the month of February through the Meil Family Foundation Valentine Challenge. For those of you not keeping track, that’s 42% more funding than in 2011. Our donors rose to the challenge and raised more than $44,000 for ACHA through their personal gifts and solicitations of family members and friends!
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Leadership Update: Activities in Full Bloom
Tuesday, March 13, 2012

As Philadelphia’s daffodils and forsythia open up, here at ACHA central all sorts of activities are already in full bloom.
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Noted Author to Attend Congenital Heart Lobby Day on March 1
Monday, February 27, 2012

“Immortal Bird: A Family Memoir” author Doron Weber will join the Adult Congenital Heart Association and Mended Little Hearts members on Capitol Hill on March 1, 2010, to lobby for needed research and surveillance for congenital heart disease.
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Leadership Update: Happy Valentine's Day!
Tuesday, February 14, 2012

February is a special month for the congenital heart community, as we promote congenital heart awareness and remind the world that for some of us, hearts are more than Valentine's Day decor.
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Leadership Update: Thanks for Your Support
Wednesday, January 18, 2012

At the beginning of 2011, ACHA set an ambitious target: $143,150 of donations from our members in support of ACHA programs. Not only did we meet this target, but we exceeded it. At the year's end, ACHA supporters had donated $158,520, including $64,550 in the month of December alone
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ACHA Receives 2 Grants to Support Programs for ACHD Medical Providers and Patients
Wednesday, January 11, 2012

We are excited to announce that Actelion Pharmaceuticals US, Inc. has awarded ACHA with two grants totaling $200,000 to support 2012 program activities.
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National Congenital Heart Lobby Day: Join Us!
Monday, January 09, 2012

Our goal for Congenital Heart Lobby Day 2012 on March 1, 2012, is to meet with our legislators and celebrate our successes. However, we realize this is only the beginning. We need to motivate our members of Congress to learn more and do more. We will be asking them to continue funding the CDC so we can learn more about prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes, and to increase funding to the National Institutes of Health (NIH) for CHD research. New this year, we will be asking our members of the House to join the Congenital Heart Caucus. Representatives can join this group, chaired by Congressman Gus Bilirakis, to show their support and receive continued information about issues related to CHD, including what the federal government can do to save money and save lives.

Register for Lobby Day by clicking here.


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Webinar Update: Post Mustard and Senning in the ACHD Patient, Jan. 17
Tuesday, January 03, 2012

ACHA announces its newest webinar, "Post Mustard and Senning in the Adult Congenital Heart Patient," presented by Gary D. Webb, MD, on Tuesday, Jan. 17, 2012, from 7-8 p.m. EST. The webinar will cover the four main issues that might show up after these procedures. Dr. Webb will also discuss why close observation by an ACHD expert is important and share steps you can to take to lead as productive a life as possible. To register, click here.

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


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Webinar Update: Eisenmenger Syndrome in the ACHD Patient, Jan. 23
Friday, December 30, 2011

ACHA announces its newest webinar, "Eisenmenger Syndrome in the Adult Congenital Heart Patient," presented by Curt J. Daniels, MD, FACC, on Monday, Jan. 23, 2012, from 7-8 p.m. EST. The webinar will cover what causes Eisenmenger syndrome and how it is diagnosed, as well as available treatments and steps you can take to avoid complications and lead as productive a life as possible. To register, click here.

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


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$2 Million Directed to the CDC for Congenital Heart Disease Surveillance
Friday, December 16, 2011

In the budget reconciliation bill, passed by both the House and Senate today, $2 million was appropriated to the Centers for Disease Control and Prevention (CDC) to address epidemiological and longitudinal data on individuals of all ages with congenital heart disease.
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Leadership Update: ACHA's New Strategic Plan
Tuesday, December 13, 2011

As 2011 comes to a close, we here at ACHA are thinking not only about 2012, but also about ACHA’s future. In order to ensure that ACHA continues to provide vital programming to our members, we recently participated in a strategic planning process that required ACHA’s staff and leaders to think long and hard about ACHA’s work and mission moving forward. Out of this process came ACHA’s 2012-2014 Strategic Plan, and I am delighted to share a brief summary of our new goals and strategies.
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Medtronic Foundation Donates to ACHA on Behalf of Global Heroes
Thursday, December 08, 2011

The Medtronic Foundation recently donated $1,000 to the Adult Congenital Heart Association on behalf of Medtronic Global Hero Mike Nall, who supports heart-related missions. Nall has a stent to treat coronary artery disease and was chosen by the Medtronic Twin Cities Marathon to be part of its 2011 class of 25 Global Heroes, after a worldwide search for runners whose lives have been improved with the help of medical devices.
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Parental Knowledge Study Findings Published in Pediatrics
Wednesday, November 30, 2011

Findings from ACHA’s Parental Knowledge Study were published this week in the online version of Pediatrics, the official journal of the American Academy of Pediatrics. Click here for the abstract of the article, "Parental Knowledge Regarding Lifelong Congenital Cardiac Care."
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Webinar Update: The Adult Congenital Heart Patient Living with Bicuspid Aortic Valve, Dec. 6
Tuesday, November 15, 2011

ACHA announces its newest webinar, "The Adult Congenital Heart Patient Living with Bicuspid Aortic Valve," presented by Jorge Alegria, MD, on Tuesday, Dec. 6, 2011, from 7-8 p.m. EST. The webinar will cover what a bicuspid aortic valve is, recommendations for treatment, and how to lead as productive a life as possible with this congenital heart defect. To register, click here.

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


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ACHA Receives Grant to Support Heart to Heart Ambassadors Program
Monday, November 07, 2011

Edwards Lifesciences LLC awarded ACHA with a $50,000 grant to support our Heart to Heart Ambassadors Program in 2011 and 2012.
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A Video Update from ACHA's President
Friday, November 04, 2011

Please join us in a moment of reflection to consider what, together, ACHA and its members were able to achieve in 2011! Watch Amy Verstappen, our president and CEO, talk about our progress.
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Webinar Update: Managing Holiday Stress, Nov. 10
Tuesday, October 25, 2011

ACHA announces its newest webinar, "Managing Holiday Stress," presented by Jamie Jackson, PhD, on Thursday, Nov. 10, 2011, from 7-8 p.m. EST. The webinar will cover stress, simple ways to take care of yourself and manage your stress, and how stress management helps you to stay healthy while improving your enjoyment of the holidays. To register, click here.

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


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ACHA Receives Three Grants to Improve Lives of Those with CHD
Thursday, October 13, 2011

The Medtronic Foundation, Actelion Pharmaceuticals US, Inc, and Gilead Sciences, Inc. awards help fund ACHA programs through 2012.
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Webinar Update: Patient-Centered Care and Outcomes, Oct. 27
Thursday, October 06, 2011

ACHA announces its newest webinar, "Patient-Centered Care and Outcomes," presented by ACHA Research Manager Ann Gianola on Thursday, Oct. 27, 2011, from 7-8 p.m. EDT. The webinar will cover patient-centered care and help you understand what you can do to play a major role in planning your health care. To register, click here.

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


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ACHA Updates Published Professional Members List
Wednesday, October 05, 2011

ACHA would like to thank all of our Professional Members whose membership not only supports the vital work ACHA does to improve health for adults with CHD, but demonstrates that as a medical professional you have a vital stake in ACHA’s mission. Click here to see ACHA’s most recent quarterly published Professional Members listing.
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ACHA Participates in CHD Briefing on Capitol Hill
Tuesday, September 27, 2011

On Sept. 19, 2011, the Adult Congenital Heart Association had a unique opportunity to participate in the "Congenital Heart Defects: A Lifelong Disease" briefing on Capitol Hill in Washington, D.C.
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New Member Stories: CHD Over 60
Monday, September 19, 2011

ACHA has recently created a new webpage, CHD Over 60, as a new avenue to showcase member stories monthly. Click here to read the first profile on Marilyn Petrosie, which includes a link to a 1947 article about Marilyn in her local newspaper.
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Insurance and SSI Webpage Updated
Wednesday, September 07, 2011

We are excited to announce that our Insurance and SSI webpage has recently been updated!
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ACHA Launches New Online Store
Friday, August 19, 2011

We recently launched our new ACHA store—visit it by clicking here. We have pins, hats, grocery totes, notebooks and water bottles for sale!
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Webinar Update: Aging with Tetralogy of Fallot, Sept 15
Wednesday, August 17, 2011

ACHA announces its newest webinar, "Aging with Tetralogy of Fallot," presented by Naser Ammash, MD, on Thursday, September 15, 2011, from 7-8 p.m. EDT. The webinar will cover all the pertinent issues that a patient or a family member or friend of a patient with repaired Tetralogy of Fallot will want to know. To register, click here.
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Webinar Update: Talking with Your Doctor
Monday, August 08, 2011

ACHA announces its newest webinar, "Parlez-Vous Medicinese? Talking with Your Doctor When You’re Speaking Different Languages," presented by Ruth Phillippi, MS, on Tuesday, August 16, 2011, from 7-8 p.m. EDT. The webinar will provide information about the differences in how doctors and patients think about CHD, as well as how to talk with your doctor and feel like you’re on the same team. To register, click here.
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Growing Up with CHD: Share Your Story
Monday, August 01, 2011

Here at the Adult Congenital Heart Association, we want to hear more about your experiences growing up as a child with CHD. We are soliciting this member input for use in developing ACHA's official presentation when addressing parent groups. We hope that you'll get involved and share your story!
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Social Security Administration "Fast Tracks" 7 CHDs
Friday, July 15, 2011

Thanks in part to the many ACHA members who shared their stories of disability struggles, yesterday the Social Security Administration announced that it has added seven congenital heart diagnoses to its Compassionate Allowance listings.
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ACHA's Newly Published Professional Members List
Monday, July 11, 2011

ACHA would like to thank all of our Professional Members whose membership not only supports the vital work ACHA does to improve health for adults with CHD, but demonstrates that as a medical professional you have a vital stake in ACHA’s mission. Click here to see ACHA’s quarterly published Professional Members listing.
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Updated ACHD Program and Travel Directories Now Available
Friday, July 08, 2011

The ACHA/ISACHD Program Directory, available at the ACHA website by clicking here, is a unique online resource offering extensive up-to-date (2010) information on more than 95 adult congenital heart programs in the United States and Canada. Whether you are looking for an ACHD program in your area (search by state), seeking a surgeon with particular ACHD expertise, helping a patient find care, or learning more about what an ACHD program offers, the ACHD program directory can help you find the answers you need.
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Leadership Update: Partnering With Parents
Wednesday, June 22, 2011

In her monthly update, ACHA President/CEO writes about ACHA's relationships with other groups that provide support to parents of children with CHD.
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ACHA Launches New Blog
Tuesday, June 07, 2011

Two weeks ago, we launched our brand new ACHA Blog! Learn some more about the blog and how you can contribute.
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A Video from our President and CEO
Wednesday, May 25, 2011

Although 2011 is not yet halfway through, we are already having a great year here at ACHA! Watch Amy Verstappen, ACHA’s president and CEO, talk about our progress.
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Leadership Update: Annual Report & Conference Wrap-Up
Tuesday, May 17, 2011

ACHA President/CEO Amy Verstappen writes about two recent key achievements—our Sixth National Conference and the publication of our 2010 annual report.
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Congenital Heart Walks Begin May 7
Thursday, April 28, 2011

The 2011 Congenital Heart Walks start Saturday, May 7. Here's a list of spring and summer sites; we hope you will start a team or register today!
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ACHA Submits Testimony Regarding FY 2012 CDC and NIH Funding
Friday, April 15, 2011

ACHA was pleased to provide public witness testimony to the House Labor, Health and Human Services, and Education Appropriations Subcommittee regarding our Fiscal Year 2012 budget requests for consideration as they begin work on appropriations for next year's budget.
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Leadership Update: Two Weeks Until Our Conference!
Thursday, April 14, 2011

Spring is here! Despite snow last week, this week the daffodils are up and ACHA spring events are in full swing!
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2011 Sixth National ACHA Conference: Early Bird Registration Deadline Extended!
Tuesday, March 22, 2011

The Early Bird registration deadline for the our 2011 Sixth National Conference in Los Angeles has been extended to April 1! Read the story for more details.
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Welcome to our new website!
Monday, March 14, 2011

We're excited for you to peruse our new website! Here are some more details.
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Donate an item for our Conference Gala raffle
Monday, March 07, 2011

ACHA is looking for items to be donated for the Conference Gala raffle. Can you help?
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Cincinnati ACHD Course
Friday, February 18, 2011

This comprehensive, advanced series of programs on Congenital Heart Disease in the Adult will take place on June 19-22, 2011.
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Leadership Update: Little Darth Vader Raises CHD Awareness
Thursday, February 17, 2011

We were thrilled to learn that Max Page, the little Darth Vader featured in the most-acclaimed Super Bowl ad, is a survivor of complex CHD (Tetralogy of Fallot). What kind of “Force” will he will need to ensure that he continues to thrive throughout his lifespan? Three things are essential: high-quality lifelong care, research and education.
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CDC Study: "Mortality Resulting From Congenital Heart Disease Among Children and Adults in the United States, 1999-2006"
Tuesday, November 23, 2010

For this study, researchers looked at data from death certificates for residents of the United States for the period 1999-2006. Researchers looked at trends in death due to congenital heart defects by age at death, race and ethnicity, and sex.
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