News

  
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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