Welcome to My Personal Page
As many of you know, I was born with a serious congenital heart defect (CHD) called tetralogy of Fallot. I have had multiple surgeries, including an open heart surgery when I was 22 years old and a pulmonary valve replacement in 2019. I have become actively involved in the congenital heart community, including advocating on behalf of the CHD community on a range of policy issues and serving on the Board of Directors of the Adult Congenital Heart Association (ACHA).
Why Donate to Support People Living With Congenital Heart Defects?
Congenital heart defects (CHDs) are the most common birth defects. CHDs occur in an estimated one in 100 births, and nearly 40,000 babies are born in the United States with a CHD each year. Approximately two to three million individuals are believed to be living in the United States with CHDs, but with no system in place to track CHDs beyond early childhood, more precise estimates are not available. In fact, although you may not be aware of it, you probably know several people, in addition to me, who have a CHD.
Historically, people with CHDs usually died as babies and rarely survived into adulthood. In the past 60 years, however, we have seen such dramatic improvement in surgical techniques that, today, more than 85% of babies born with CHDs live to the age of 18, and many have a chance to live long and healthy lives. In fact, it is estimated that the number of adults living with CHDs has grown to exceed the number of children living with CHDs. This is a wonderful thing for people like me, but it has also led to a number of unexpected challenges.
One major problem our community faces is that there simply aren’t enough clinics or doctors focused on treating adults with CHDs. As a result, fewer than 10% of adults with CHDs are receiving the recommended care.
Another challenge we face is that the medical community has never been able to gather data and track adults living with CHDs—as a result, our medical professionals have frighteningly little statistical information to inform their decisions. Thanks to our lobbying efforts, we have secured federal funding for a small pilot program, but there is still much more work to be done.
Yet another obstacle is the fact that the community serving individuals with CHDs is far less developed and has far fewer resources than other medical communities. For example, CHDs are as common as autism and about 25 times more common than cystic fibrosis, yet the money spent on advocacy efforts, public awareness, and patient support for the CHD community is a tiny fraction of the money spent on behalf of other medical communities.
The CHD community has a long way to go, and we are working hard to get there. But this also means that every dollar donated to support those of us living with CHDs will have a very big impact.
Why Support ACHA?
ACHA is the leading national organization dedicated to supporting individuals and families living with congenital heart defects through education, advocacy, and promoting research. Your contribution will go a long way towards supporting this vital work.
- ACHA has led efforts to support the CHD community during the COVID-19 pandemic.
- Your contribution will pay for advocacy programs to push for more research, surveillance, and state and federal policies designed to support individuals with CHDs. For example, ACHA successfully lobbied for the passage of the Congenital Heart Futures Act, which authorized federal research and data collection specific to CHDs. I was proud to play a small role in these efforts, and I intend to return to DC in a few months to urge Congress to maintain this incredibly vital funding stream.
- Your contribution will support our efforts to help our medical professionals provide better care for us. For example, in partnership with the leading adult CHD specialists in the country, ACHA recently persuaded the American Board of Medical Specialties to create a new “board certification” for doctors who wish to specialize in treating adults with CHDs. In addition, ACHA recently launched an Accreditation Program for adult CHD clinics, which, for the first time, ensured that clinics serving adults with CHDs meet specific standards.
- Your contribution will go towards education and peer support, in order to help people living with CHDs learn about their defect, obtain proper care, and connect with peers who can support them through their experience. For instance, I am one of about 70 volunteer Heart to Heart Ambassadors across the country who provide peer support to CHD patients. We need resources to recruit and train ambassadors and to connect us with patients who need our support.
I can’t thank you enough for your consideration – any support will go a long way and would really mean a lot to me. I am always delighted to discuss these issues with you – please do not hesitate to reach out.
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