Leadership Update: Speak Up for CHD

Posted Tuesday, Jul 17, 2012

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

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. If you would like to see this funding continue, please consider scheduling a meeting with your House and Senate members. Don’t have time for an in-person visit? Take a minute to send an email urging their support. Click here for more about how to help your government officials understand and take action for CHD.

Summer is also a time when many of us get outside and get active. Although those of us born in earlier eras often were warned against exercising as children, new research suggests that staying physically active can help almost all CHD patients thrive. Of course, all of us “funky heart club” members should check in with our ACHD cardiology team to identify activities that are a good match for our own unique challenges. For me, daily walking plus swimming or yoga help me feel my best. One way to get walking this summer is to start training for a Congenital Heart Walk. This month, inaugural walks took place in Chicago and Los Angeles, which together raised over $60,000 for CHD research, education, advocacy, and outreach. More importantly, each walk offers a unique opportunity for CHD survivors and their families to come together to share stories and raise awareness of CHD as a lifelong journey.

Prefer running (or biking or swimming) to walking? Consider joining an athletic event to raise awareness for ACHA. ACHA member Nels Matson (at right) recently ran a 24-hour marathon and raised more than $1,000 for ACHA activities. This September 9th, ACHA member Ken Woodhouse will lead a team of ACHA supporters in the Chicago Half Marathon. Are you more of a cookie baker than a runner? Consider organizing a tea or dinner to educate your friends and family about CHD. For more information on creating an ACHA event, contact Jen Hotsko at jhotsko@achaheart.org.  

Of course, life with CHD can also bring times when the last thing on your mind may be exercise or house parties. If you or someone you care about is struggling with CHD-related issues, please remember that ACHA can help. Our member services staffers and Heart to Heart Ambassadors are all available to lend a listening ear and help connect you with resources and information—all through an email to H2H@achaheart.org. Our website offers a complete listing of services offered at more than 90 ACHD programs throughout the country and a wealth of educational resources, including archived webinars on a wide variety of CHD-related topics.

Hope each of you has a summer of health and happiness!

Sincerely,

Amy Verstappen
ACHA President/CEO

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