As I was growing up, I always felt my parents did an excellent job of empowering me when it came to my congenital heart disease (CHD). I knew the importance of taking my medications and understanding my physical limitations. What none of us knew until I was around 22 years old, however, is that there was an organization out there specifically for adults like me. I remember getting my membership packet in the mail from the Adult Congenital Heart Association (ACHA) and being amazed at all the resources there were for adult CHDers and their families.
It wasn’t until several years later, after I began caring for pediatric CHD patients and losing my nephew unexpectedly when he was just 20 years old to CHD, that I began to actively get involved with fundraising for the ACHA through planning the Nashville Congenital Heart Walk. On June 17, we will have our third walk and it makes me swell with pride that our community comes together to raise funds for the ACHA and their partner organization, The Children’s Heart Foundation.
Just take a look at all the ways fundraising makes a difference and allows the ACHA to continue their work:
- Heart to Heart Ambassadors – connects CHD patients and family members with trained peers who give critical support, guidance and resources
- ACHD Accreditation Program – identifies critical needs for consistency and standardization of care through development of accredited ACHA centers
- Regional Education Events – provides patient education in four different markets each year allowing hundreds of people to access beneficial information regarding their care
- ACHD Fellowship Program – funds two years of training to cardiologists specializing in adult congenital cardiac care, which is sponsored by Actelion Pharmaceuticals US, Inc.
- Advocacy – collaborates with the Pediatric Congenital Heart Association and the Children’s Heart Foundation to provide an opportunity for CHD patients, family members and providers to advocate for CHD initiatives by talking with their state legislators in Washington, D.C.
- Patient Education – provides invaluable information to the adult CHD population through their website, forums, webinars and social media
It is my hope that one day we may have a world without CHD but until then, the question for me is not why I fundraise but why would I not. If supporting the ACHA can help one more adult feel empowered and receive the care they deserve, prevent one more family from experiencing the heartache of losing a loved one like my family did, help make the transition easier from pediatric to adult care, and make our world more aware of CHD, then that’s more than enough reason for me. If you’d like to fundraise, I’d like to invite you to visit the ACHA website and click on the Get Involved tab. There you’ll find details on how to do the following:
- Sign up for a Congenital Heart Walk in your area
- Host your own ACHA fundraiser
- Get enrolled in the following programs to donate to ACHA while you shop: AmazonSmile, eBay Giving Works, Goodsearch, Puravida and Bravelets bracelets, iGive and Giving Assistant
Together, we can make difference so get involved today!
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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.
The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.