The ACHD Roundtable

✨ Get to Know Marisa ✨

Marisa is an ACHD patient from Mandeville, Louisiana, who joined the ACHD Roundtable to give back to the community and help create meaningful change through patient-centered research and connection.

She’s inspired by the opportunity to learn, grow, and be there for others living with ACHD as we work toward a better future together. One thing Marisa wishes more people understood about ACHD is the importance of mental health care.

We’re grateful to have Marisa’s voice as part of this work. 💙

✨ Meeting Reminder ✨

Join us tomorrow, January 20 at 6:30 PM CDT for our final ACHD Roundtable meeting. We can’t wait to reflect, connect, and close out this meaningful project together.

Happy Thanksgiving from the ACHD Roundtable!

Today, we’re grateful for the incredible patients, families, caregivers, and providers who make up our community. Thank you for sharing your experiences, lending your voices, and helping us move ACHD research forward.

Meet ACHD Roundtable Member: Jennifer W.

An ACHD patient from Austin, TX, Jennifer brings her lived experience and her background in health informatics to our ACHD Roundtable. She’s passionate about patient-centered research and believes that “patients are experts on the lived CHD experience,” and that including them only strengthens the impact of our work.

What drives her commitment to the CHD community? In her own words:

“The best part of working with this community has been connecting with patients and providers across the country. The CHD community is special because it is close-knit; we all know each other on a deeper level. A lot of the work I do is for those we’ve lost, as well. Remembering that inspires me to keep going.”

Outside of advocacy, you can find her ice skating, at pilates, or walking trails with friends. We’re grateful for the insight and heart she brings to this work.

It’s been two months since the ACHD Roundtable Convening, and we’re still grateful for the voices that showed up and shaped every discussion.

Today, we’re sharing a breakdown of who participated by age, relationship to CHD, gender, and race/ethnicity.
People traveled from Louisiana, Texas, and Oklahoma to be part of something meaningful, and we’re honored to continue this work together. Thank you to everyone who showed up, shared openly, and helped shape the future of ACHD research and care.

This World Heart Day, we want to celebrate the heart of the ACHD Roundtable—our incredible congenital heart disease patients. Their voices, experiences, and ideas guide every conversation and shape the research questions that truly matter. Today and every day, we thank them for sharing their stories and leading the way toward better care and brighter futures.

We’re excited to roll up our sleeves this weekend and dive into creating research questions that matter most to ACHD patients in the South Central U.S. 💙 See you soon!

Meet Suhas

Suhas joined the ACHD Roundtable because he was inspired by the opportunity to work alongside patients, physicians, and researchers to improve access to ACHD care from the ground up.

“Patient-centered research is important to me because the voices of those directly impacted by care are essential. Real change happens when patients are involved in shaping the path forward.”

Suhas is especially passionate about affordability and insurance:
“CHD care is lifelong and complex, often leading to high costs and gaps in coverage. We need to keep these issues front and center to create more equitable access for everyone in the ACHD community.”

We’re grateful to have Suhas at the table. Bringing lived experience, insight, and determination to help move ACHD care forward.

What affects lifelong care for people with CHD?

Members of the ACHD Roundtable are exploring big questions about what really impacts access to lifelong, specialized congenital heart care. That includes everything from insurance and mental health to life changes like starting college or moving across the country.

We may not have one clear answer, but we’re beginning to explore this topic so we can build thoughtful, meaningful research questions around it

Which of these do you think has the biggest impact on staying in lifelong CHD care?
(Pick one below!)

Insurance & cost

Access to specialists

Life transitions (college, jobs, moving)

Mental health & burnout

Our hearts are with everyone in Texas impacted by the devastating floods. This tragedy hits especially close to home as some of our ACHD Roundtable members call Texas home.

It’s one thing to see a disaster on the news, and another when it touches the lives of those in your own community. Please know we are thinking of you, holding space for whatever you’re feeling, and ready to support however we can. If you’re safe and able, check in on someone. Know that you are not alone.