Gifts from the Heart
Patient/Family Members of ACHA give back because, quite simply, they care. Below are a few of these Members who share their reasons for donating to ACHA.
Do you want to share your story about why you donate? Email email@example.com.
To view our Gifts from the Heart brochure, click here.
I am living with an unrepaired congenital heart defect, and I found ACHA online in 2003 and attended their conference in Arlington, Virginia. I gave my first donation to ACHA because of how powerfully I was affected by the 2003 conference. And, I continue to give generously so that other families can have the same experience, and so that I have continued access to the information ACHA provides.
To me, the most important work that ACHA does is connect, identify, and unify adults who were born with heart defects as a community. This naturally leads to education and helping our medical teams understand how to help us. Because of this and ACHA’s excellence, I am empowered to help our community effectively through my giving. Our quality of life depends on our strength as a community that is committed to helping ourselves.
Join Gail in her donation. Please donate now.
Jeff Coulter with daughter Kristen
My daughter was born with tetralogy of Fallot in 1981. Her first surgery at the Children’s Hospital of Philadelphia was when she was eight days old, followed by another 10 days later. We flew to Boston for her corrective surgery when she was 18 months old. Subsequent procedures included an angioplasty when she was in her teens, and then a pulmonary valve replacement during her early 20s. Currently, my daughter is in her 30s and requires oxygen therapy almost 24/7 due to her congestive heart failure and pulmonary hypertension. However, her condition has not completely slowed her down, and she and her husband are the proud parents of a happy and healthy child.
Although she has soldiered through everything associated with her situation, she is very tired and somewhat depressed at times. I became aware of ACHA and the congenital heart disease community in 2013 while surfing through the internet looking for possible support groups for my daughter. I donate to ACHA because my hope is through research, eventually congenital heart conditions will become less of an impact on the lives of those who deal with these issues on a daily basis. I hope my contribution can assist in some small way. If there was a chance donations will help someone’s heart, shouldn’t we find it in ours to take that chance?
Join Jeff in his donation. Please donate now.
I was born with tetralogy of Fallot in 1956 and given very slim odds of survival. By the time I was a teenager, I had undergone three surgeries. Then, like most of the congenital heart disease population, I thought I was “fixed,” and I moved on with my life by going to college, graduating, and getting a job. I didn't realize how serious my condition was until, at 53 years old, it was recommended I lose weight under the supervision of a cardiologist. There were so many cardiologists in my area, so I turned to Google, and that’s where I discovered ACHA. Sometimes things happen in life for a reason.
Congenital heart defects affect so many people. Statistics show that a heart defect appears in nearly 1 in 100 births, but personally I know at least four people in my social community that are affected with various degrees of congenital heart disease. Growing public awareness about this issue is critical for research and development, and is one of the key challenges that ACHA addresses. Knowing that even my little contribution makes a difference in someone’s life makes me happy to support ACHA.
Join Lynelle in her donation. Please donate now.
I was born with tetralogy of Fallot in 1964, and I went through my first corrective surgery in 1965. I was quite healthy for many years following, but I encountered a bump in the road in 2003 when I suffered a decline in my heart health. A friend of mine introduced me to ACHA and led me to an adult congenital heart disease clinic. On the initial visit, the specialist doctors found a very leaky tricuspid valve and recommended surgery. Post surgery I felt terrific and resumed all activities. I was hooked on ACHA! I instantly became a full member of ACHA, joined the online community, and began attending the conferences. I have not changed since, except to become more involved each year.
I donate each year because ACHA directed me to the congenital clinic that gave me my life back. I continue to give in hopes that ACHA’s good work will be able to reach others out there who need the same help—to find a community, not feel alone, find an ACHD clinic, and get the specialty care they need. Anyone who has any connection to congenital heart disease, whether a patient, family member, or friend, knows the struggle that dealing with this disease can be. Consider if such an organization like ACHA were not available. I guarantee the decision to donate after that experience will not be a difficult decision to make.
Join Lana in her donation. Please donate now.
Seana Gallagher with daughter Erin
My daughter Erin was born in 1989 with complete atrioventricular canal defect. She spent seven months in the ICU of a hospital that was not capable of supporting the needs of a baby with such a complex heart defect. We eventually found the appropriate care she needed from doctors and nurses specializing in pediatric congenital heart defects. The difference between the two hospitals and staff meant the difference between life and death for my daughter. When Erin became an adult, we understood the need to find adult congenital heart disease care. We found ACHA with the hope of discovering where these doctors and hospitals are located, and to learn more about health-related issues for adults with congenital heart disease.
When we joined ACHA we recognized that it was in the grassroots stages and needed our support as much as we needed theirs. We continue to donate our time and money to ACHA because we know how important it is to have the right care and to get that, we must work together to advocate for advances in research, medical training, and long-term patient follow-up and tracking.
Join Seana in her donation. Please donate now.
I was born in 1973 with tetralogy of Fallot and experienced one bypass surgery and four open heart procedures by age 17. I found ACHA in 2001 by searching for an online congenital heart condition group one day. My future husband at the time encouraged me to attend the ACHA National Conference in Rochester, MN. Up until attending the conference, I had never met anyone else in my life that had CHD. It was truly a life-changing experience for the both of us.
I give to ACHA because I believe in the mission. My husband and I have been a part of the ACHA community for more than 15 years, and we have seen and experienced the great work ACHA has done and continues to do.
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Tabitha Moe, MD
While I was applying to go to medical school, I worked as a medical assistant in an adult cardiology office. I met a woman my age with complex congenital heart disease who was a patient of the practice. I was so fascinated by her journey and looked for a way to connect to the community. My search led me to ACHA. I was accepted into medical school and found myself attending the ACHA medical provider conference in 2009 in Boston.
I give to ACHA because it gives me an opportunity to be further involved in a growing movement to provide high-quality care to complex patients in an ever more complex healthcare environment. Through my experience as a medical provider, I have seen firsthand ACHA’s ability to bring together such a passionate group of patients and clinicians, who together create a better future for congenital heart defect survivors.
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Photography below by Carryn Golden
I was born with a double aortic arch and a vascular ring, and I also have arrhythmia. So much progress has been made in CHD care, but there is still so much that needs to be learned. There are many people out there who have CHD, who do not have any resources or support, and it is scary to think that you are all alone. I choose to donate to ACHA because the organization serves as an invaluable resource for patients, families, friends and healthcare providers who are affected by CHD. For me, the biggest benefit of supporting ACHA is helping to perpetuate the great services and support that the organization provides. ACHA serves as a resource of people who understand what it is like to be affected by CHD, and supporting ACHA helps to ensure that this resource will continue to thrive and serve the CHD community.
Join Tracy in her donation. Please donate now.
Jackie Mace (Tracy’s mother)
My daughter has congenital heart disease and I donate to ACHA because of the efforts they make and the resources they provide to adults with congenital heart disease and their families. We were told that Tracy was “fixed” as a child, but learned through ACHA that she was not. If you’re a parent and have been through the trauma of knowing your child with CHD is having or has had difficulty, you should know that ACHA will be there for members to support them during these experiences.
Join Jackie in her donation. Please donate now.
I was born with a combination of congenital heart defects and underwent various corrective surgeries throughout my childhood. As I have grown into adulthood, it was brought to my attention that research is limited as far as the affects that CHD has on adults. I learned that I am lucky to live in Philadelphia and to be in such close proximity to adult congenital heart doctors. I want to know that I am doing something to support research on the long-term effects of CHD, as well as making sure there are ACHD doctors throughout all regions of the country. The biggest benefit of being an ACHA donor is being provided with the latest research and events related to ACHA. I also enjoy being connected to other members and being able to relate to their concerns and joys that they experience through themselves or friends/family having ACHD. People with CHD need research to continue, so that clinicians can discover long-term effects and treatment plans for patients.
Join Michelle in her donation. Please donate now.
When I was seven years old, I was diagnosed with tetralogy of Fallot and leaky valves. At that time, doctors fixed the hole, but not the valves. Due to some complications, I recently saw a congenital heart specialist who performed my valve surgery. My recovery went well, and I today feel so much better! Through ACHA I am connected to the CHD community and have support from other people who have the same condition I have. It is nice to have a group that you can count on when you have questions and when you need the support. I donate to ACHA because I feel it is important to support an organization that I belong to and that is and will remain a big part of my life; we, as a community, need ACHA to continue to its work to make it easier for adults with CHD to survive.
Join Michele in her donation. Please donate now.
Photography below by Max S. Gerber
I was born with subaortic stenosis, and I donate to ACHA to help better the quality of care for me and all other adults with congenital heart disease. There are many benefits of being an ACHA donor. First, through becoming more involved with ACHA advocacy and fundraising efforts, I have established relationships with my doctors and other members of the medical community that I would not have otherwise. One of my doctors actually personally emails me my test results. Second, it’s given me an opportunity to meet and work with other adults with congenital heart disease, with whom I can share stories and offer support when needed. Lastly, supporting ACHA gives me the personal satisfaction that I am helping others like me, as well as the millions of children that will grow up to be adults with CHD. There is no other organization that is 100% dedicated to bettering the quality of care and extending the lives of adults with congenital heart disease. By investing in ACHA you are investing in your own future, or the future of your loved one with congenital heart disease.
Join Andi in her donation. Please donate now.
I have tetralogy of Fallot and was lost to care for more than 30 years. I started to experience some problems and ultimately wound up in an ACHD clinic; until then, I didn't even know there was such a thing. The doctors had always told me that I was “fixed” and didn't need to worry about my heart. So I was shocked, upset and very scared to learn that I was going to have to have open heart surgery. My ACHD doctor gave me a brochure about ACHA and told me to check it out. When I did, I found the ACHA Discussion Forum. Even though I don't normally post things online, I poured my heart out there over the next few months. The people who wrote back to me helped me in ways that my family, friends and doctors couldn't. Since my new connections were all personally affected by a CHD, they had a unique understanding of what I was feeling. I started making donations to ACHA during the “Don't Be Lost” campaign. I wanted to give back and to help ACHA find others who were lost to care like I was. I continue to donate to ACHA because the organization has been one of the best things to happen to me. Through ACHA, I have gotten a new understanding of my heart and what it means to live with a CHD.
Join Diane in her donation. Please donate now.
I am very close to the congenital heart disease community because I was born with tetralogy of Fallot. I have been involved with ACHA since close to the organization’s inception, and I believe in ACHA. I believe in the mission, and I donate to ACHA because I have witnessed firsthand what good has come of the founders’ dream. The biggest benefit of being an ACHA donor is the satisfaction of knowing where the donor money is going. Seeing ACHA grow over the years, you know it is so beneficial to all of us through areas such as lobbying, the website, webinars, conferences, the Discussion Forum, and education. ACHA has been a big help and a benefit to all of us; this organization is so much different than others because it truly benefits us each and every day and ACHA improves each and every day.
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I was born with multiple heart defects: atrial septal defect, anomalous pulmonary venous return and anomalous jugular vein. I donate to ACHA because I think it is important to promote research of adult congenital heart disease, and to be a part of the ACHA community. I want to keep aware of new techniques and medical advances, and ACHA provides me with that information. The biggest benefit of ACHA is meeting others who have similar health issues, and knowing you are not alone on this journey. I would encourage others to become involved and take an active role in their own health care. No one knows your body better than yourself.
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I had open heart surgery for transposition of the great arteries as a baby. I am now 34 years old and feel so proud to be a part of the ACHA community. I choose to donate to ACHA because growing up as a congenital heart disease survivor can feel very isolating. ACHA is an incredible organization in bridging the gap. Whether you choose to stay connected to others through the ACHA Discussion Forum, Facebook, national conferences, or just browsing the resources online, inevitably you feel less alone and you become an advocate for your health care.
Often we may think, “I can only give $5 or $10, so what’s the point?” Try and think of the cumulative—it all adds up! Donating can provide a sense of purpose. It feels good. Lastly, it is empowering, for me, to support ACHA as it keeps me connected to my congenital heart disease…in a positive way.
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These comments are from Rick and his wife, Joy.
Our 26-year-old son, Zachary, is a congenital heart patient with multiple defects (transposition, coarctation of the aorta, and ventricular septal defect). As Zack reached adulthood, the realities of his lifelong condition were addressed more directly and became more apparent and sobering. So, after finding out about ACHA through our medical team, we eagerly joined. ACHA and all the connections we have made from that affiliation and the resources available to us have been invaluable to us in our support of Zack. The broader agenda that ACHA is addressing to improve the life of our son and the congenital heart disease community is daunting and requires financial support. Quite simply, the biggest benefit we get from being donors is the satisfaction from knowing we’ve made a difference with our donation and also that we’ve contributed to our son’s future well-being.
Many of the nonprofit organizations focused on major health issues have broad support and enormous resources. And while there are more than a million adults with congenital heart disease, this is not near the base these other organizations can draw on. If you are a congenital heart patient or a family member of a patient, you can personally benefit from the support resources made available through ACHA and through access to a community of health professionals. We certainly have. Your donations are also for your sake!
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I have a congenital heart defect called anomalous origin of the right coronary artery from the left sinus of Valsalva. ACHA is close to my heart, and I donate to ACHA because it makes me feel really good to help make a positive difference for the congenital heart disease community. Through ACHA, I learned about and supported the Congenital Heart Futures Act as a patient advocate in Washington, D.C. It was an honor to be a part of getting this landmark legislation passed.
I give to ACHA because I can see my dollars at work via the conferences I attend. I have become acquainted with the patients, doctors, caregivers, family members and friends of patients who learn, benefit and enjoy the tangible outcomes of ACHA donor support. I would encourage others to give from the heart in whatever way is possible! Make a difference, help save a life by giving to ACHA. The life you save could very well be your own, or that of a friend or beloved family member.
Join Jacqueline in her donation. Please donate now.