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Leadership Update: How to Use Your Passion for CHD

This is the leadership update from May's e-newsletter.

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. Each person has been touched by CHD and each one is passionate about creating a better future for every person born with heart defects. Some of this passion comes from those most directly affected by CHD: the adult survivor now facing his fifth open heart surgery, the mother who watched her month-old baby lose her battle with CHD. Other connections are more indirect: the teacher whose class sent cards to the nine-year-old facing life-threatening surgery, the employees who held down the fort while their CHD-affected boss got her new pacemaker.

As a CHD survivor, I am particularly moved by these concrete reminders that you do not have to have CHD, or have a family member with CHD, to speak up for better outcomes for those living with this country’s No. 1 birth defect. It also reminds me how important it is for those affected by CHD to speak up about their challenges and triumphs. I hope many of you will get a chance to take part in one of the 25 Congenital Heart Walks now planned for 2012, or will volunteer to help start a walk in your community.

Another great way to share CHD stories is through the ACHA Blog, with a special shout-out going to the wonderful CHD-affected moms and children who participated in our Mother’s Day week blogging. Do you have a story you would like to share about being a parent while managing CHD, parenting an adult child with CHD, or having a parent living with CHD? Each blog post allows you to share your own experiences in the comments, both at the website and at our Facebook page.

All ACHA activities drive from leadership, with ACHA’s Board of Directors responsible for overseeing the strategic, organizational, and fiscal health of the organization. Spring is the time when ACHA holds its board elections, and we are currently seeking individuals with significant accomplishments and leadership abilities in business, government, philanthropy, and/or the nonprofit sector to serve on ACHA’s board. You can read biographies of our current board members here and find more information about board service here.

What else has been happening at ACHA central? We are thrilled that the sixth edition of ACHA’s Travel Directory just went to print. This directory offers emergency contact information for ACHD care throughout the United States and around the world, with more than 200 CHD care sites listed. The new edition will be available in time for the summer travel season—look for a notice at the website soon to get your new copy!

Wishing each of you a heart-happy and heart-healthy May,

Amy Verstappen
ACHA President/CEO

Posted on Tuesday, May 15, 2012