Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

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 Jessica DiGiovanni, ACHA's Development Manager, at jdigiovanni@achaheart.org.  

To view our Gifts from the Heart brochure, click here.

Tracy Mace

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.

Michelle Hall

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.

Michele Rothman

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 above by Carryn Golden

Andi Young

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.

Diane Neff

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.

Laura Goldenschue

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.

Join Laura in her donation. Please donate now.

Shirley Musil

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.

Join Shirley in her donation. Please donate now.

Sara Dorband

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.

Join Sara in her donation. Please donate now.

Rick McTyre

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!

Join Rick and Joy in their donation. Please donate now.

Jacqueline Alikhaani

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.

Photography by Max S. Gerber