ACHA is thrilled and honored to announce our first-ever endowment: The Robin Schlesinger Adult Congenital Heart Endowment. The purpose of the Endowment Fund is to enhance ACHA’s programs to make adults living with congenital heart disease (CHD) and the general public more aware of the need for specialized lifelong care and to help patients obtain this care. Click here to donate to the fund.
Thank you to Al and Sue Schlesinger for sharing Robin’s story and the purpose behind their endowment formed in 2025:
All About Robin
Robin fought a 52-year battle with congenital heart disease, which she bore with dignity and grace throughout her life. Robin was born in Minneapolis in 1970 with d-transposition of the great arteries and a large ventricular septal defect. Enduring numerous open heart surgeries and a stroke early in life, Robin repeatedly prevailed despite constant medical complications. Her strength and courage were an inspiration to those around her. She was a warm-hearted warrior, loved by those who knew her.
Robin attended Chatham High School in New Jersey and Harcum Junior college in Bryn Mawr, PA. She later worked at the Madison N.J. YMCA, caring for children for 20 years until she was no longer able. Robin loved the kids under her care, and they loved her, and she became a well-known person in the community among many of the parents of the children she cared for. In the face of her constant battle with illness, Robin had a wicked sense of humor, a beautiful smile, and a cheerful and optimistic disposition—always planning for the future even on the day she died.
Despite wearing a brace from the age of 12 as a result of the stroke she suffered early in life, Robin loved to walk, and she was passionate about personal nutrition. She was involved in numerous health-related organizations including Mended Hearts and the Morristown Medical Center Stroke Support Group, and was a longtime and loyal contributor to the Adult Congenital Heart Association (ACHA).
Robin died suddenly from a ruptured aortic aneurysm while awaiting surgery at University of Pennsylvania hospital in the early morning of November 1, 2022. The nurse attending her the night she died called her a “ ball of sunshine.”
Robin and ACHA
We remember that Robin found ACHA through a friend. Robin, Sue, and I attended an ACHA national conference in Philadelphia, I think about 15 years ago. Robin met and became acquainted with a number of similarly situated heart patients and some of their parents, and heard some remarkable stories of survival and achievement. Robin enjoyed the various “breakout” sessions she attended, and made a good friend on the evening bus tour of Philadelphia; they remained phone and internet pals until his death. Sue and I continue to stay in touch with his mom, who has been a great support to us.
ACHA’s Clinic Directory was very useful when Robin had to transition CHD care. Her long-standing pediatric cardiologist, who treated her well into adulthood, decided that her few remaining adult patients would be better served by an adult congenital specialist. It's not easy to find the best specialists in any field of medicine and it's doubly hard with adult congenital heart disease because there are so few specialists—so the directory proved invaluable.
The Creation of the Endowment
We wanted to create a lasting memorial to Robin that would help congenital heart patients. We looked at doing so through some large organizations, but decided that ACHA was the place where we could make our contribution dollars work most efficiently. Robin was always concerned that Americans weren't aware enough of CHD in adults and that some adults suffering from CHD weren't getting specialized care because they didn't know they needed it, or if they had an idea they needed it, knew not where to find it. We—Robin, Sue and I—understood that ACHA was founded at least in part to try to rectify these problems.
We decided on the endowment structure of our memorial because of its lasting nature; that means it will be a source of funds for ACHA in perpetuity, adding to ACHA’s financial stability. It will perpetuate Robin’s memory and it will always be working to advance a cause she held dear.
The Endowment’s Key Purposes
The annual investment earnings of the endowment will be used to provide annual grants in Robin's name to be designated for one or more of three ACHA programs, two which are longstanding and one under development.
Improving ACHA’s website. Since almost everyone uses the internet, the website is the most obvious and cost effective way to communicate a lot of useful information to a lot of people, and ACHA has a very good website. How better to make accurate and helpful information on adult CHD available to Americans and the world at large? So we think the website is a great way to broaden awareness of adult CHD and strengthening the website can only add to its effectiveness.
Broadening the Heart to Heart Peer Mentor Program. Many adults with severe CHD can sometimes feel depressed and isolated. We think that talking to a trained, knowledgeable, and sympathetic person (like a Peer Mentor) who is in the same boat—dealing with the same or similar problems, and perhaps has been there for a longer time—can help a patient's attitude, disposition, and even physical health. We hope our funds and those of others can make this program more widely available, by enabling the training of more Peer Mentors. We know that Robin would have loved the program had it been available when she was younger.
Under development: expert service navigators. With the newly established endowment, the focus will be supporting the first two purposes that are already in existence. However, as the earnings from the Endowment grow over time, our vision is that ACHA will be able to improve and expand the Peer Mentor Program by engaging expert service navigators to collaborate directly with patients seeking help with insurance questions/issues, accessing local resources, referrals, and more.