Empower My Congenital Heart, San Francisco, CA (2026)

02/15/2026

There are so many more ACHD stories to be shared 🤍

Although CHD Awareness Week is over, we aren’t done sharing stories. We believe amplifying voices creates space for awareness to continue far beyond one week of the year. As we move through the rest of Heart Month, we’ll keep highlighting the experiences and resilience of adults living with congenital heart disease.

02/14/2026

Meet Lauren!

Lauren, 38, has lived with complex congenital heart disease her entire life. Born with Tricuspid Atresia, a Hypoplastic Right Ventricle, a Large VSD, and multiple muscular ASDs, she has undergone three open-heart surgeries—including a Fontan revision with a Maze procedure and pacemaker implantation at age 34—along with countless other procedures and tests. Despite these challenges, Lauren approaches life with gratitude, resilience, and a deep appreciation for the everyday moments that make life meaningful.

Beyond her medical journey, Lauren is a dedicated CHD and mental health advocate. For more than 18 years, she has shared her story, offered support, and built connections within the CHD community, which she calls her second family. She credits her experiences with teaching her to live one day at a time, find joy in small victories, and recognize the beauty in life, even during difficult moments.

When she’s not advocating, Lauren enjoys collecting coins, exploring history at museums, bargain hunting, and re-discovering hobbies like bowling and piano. Married to her husband Chris for 14 years, she continues to inspire others by showing how living with CHD can teach resilience, hope, and the importance of connection.

02/13/2026

ACHD Awareness Day

Today, we’re highlighting a special part of our team — Sedona, Joe, and Lindsay — the members of EmpowerMyCH who are adults living with congenital heart disease.

EmpowerMyCH is led by Dr. Anushree Agarwal (alongside other clinicians and medical experts), and we’re proud to say this patient-centered digital tool is built with patients too. Their lived experience with CHD helps shape every feature, every resource, and every decision we make - ensuring it reflects real-life needs, not just clinical checklists.

EmpowerMyCH exists because we’re passionate about making the healthcare journey less overwhelming and more empowering for our ACHD patients! Together, we’re on a mission to turn confusion into clarity and isolation into connection.

These team members bring lived insight, professional expertise, and deep empathy to every conversation because without patient voices, there is no truly meaningful patient-centered care. And without this community, there would be no EmpowerMyCH.

Today, we celebrate adult congenital heart disease awareness — and the power of building something with the very people it’s meant to serve.

02/12/2026

Meet Roslyn
An ACHD patient whose CHD has shaped both her outlook on life and her career.

CHD shows up in Roslyn’s life every day. She works as a pediatric cardiac nurse in cardiothoracic surgery, caring for high-risk cardiac infants and supporting families as they learn to care for their babies after complex heart surgeries. Beyond her work, she volunteers year-round with Camp del Corazon and PACE as a nurse coordinator and advisor, helping plan events and summer camp.

Roslyn feels fortunate to be born in the U.S., in a large city with access to specialized cardiac care. As an adult, understanding the complexity of CHD has only strengthened that gratitude and reinforced how access to care can be life-changing.

Her own childhood experiences in the hospital inspired her path into pediatric cardiac nursing and global health. She has participated in over 30 medical volunteer trips to developing countries, providing cardiac surgery to children and education to local medical teams. Today, she’s pursuing her Master’s degree to become a pediatric nurse practitioner, with hopes of providing cardiac care to children in rural and underserved communities worldwide.

Living with CHD has helped Roslyn find her purpose. She continues to use her experience to care for, educate, and advocate for others every single day.

02/11/2026

Meet David 💙

David lives with CHD (d-TGA, Senning procedure), and like many adults with CHD, his life didn’t follow the path he once imagined.

He always dreamed of becoming a pilot, but CHD meant that goal had to shift. Instead, David found another passion—music—and built a career doing something he truly loves. Living with CHD taught him to adapt, appreciate the good days, and stay resilient through the hard ones.

David also describes himself as a “classic lost to care” story. After college, he went more than a decade without seeing a cardiologist until he needed urgent care. That experience pushed him to learn his medical history, find the right ACHD team, and take an active role in his health—where he’s now in the care he needs and deserves.

⛳ Fun fact: David loves getting out on the golf course whenever he can.

Thank you, David, for sharing your story and reminding us that while CHD may change the path, it doesn’t stop us from finding purpose along the way. 💙

02/10/2026

Meet Casey 💙
Her CHD journey is one of miracle, survival, and deep hope.

“I was diagnosed with Anomalous Left Coronary Artery from the Pulmonary Artery (ALCAPA) at age 12 after sudden cardiac arrest during sprints. By some miracle, I was resuscitated by my basketball coach with the guidance of a 911 dispatcher. I was handed a clipboard when I woke up intubated in a hospital bed. What I wrote is now scrawled on my right forearm permanently — real or dream?”

“One thing I wish others would understand about living with a congenital heart defect is that it’s okay to not know what to say to us. I’ve lived with my diagnosis nearly 16 years, and blanket statements have always left me feeling exceptionally alone or misunderstood. ‘It’ll all be okay’ will always land less sincere than ‘I’m here for you.’”

The CHD journey is deeply personal, and no two stories are the same.
Thank you, Casey, for trusting us with your story and reminding us of the power of presence. 💙

02/09/2026

Meet Misty 💙

CHD: Coarctation of the Aorta, Subaortic Stenosis (s/p mechanical valve replacement)

Misty has been an active voice in the ACHD community for many years and makes an impact wherever she goes. Let’s hear from her on the importance of advocacy and how she sees strength and resilience within the CHD community.

Why is advocating for your healthcare important?
“Advocating for my health is important to me because I've seen the impact of being lost to care. My nephew, born with truncus arteriosus, passed away unexpectedly when he was 20 years old. He was out of care for less than two years. About a year afterward, I started experiencing arrhythmias, including premature ventricular contractions and runs of ventricular tachycardia. That time in my life really solidified that CHD is a lifelong disease requiring consistent monitoring and self-advocacy to stay on top of my health.”

How has CHD shaped how you see strength and resilience?
“I have been fortunate to live a mostly normal life despite CHD and have not needed an intervention or surgery since childhood. However, as an advocate, I have met many other adults living with CHD, some with my same defects who have had a much different path. Each person's journey is unique, but we all share a desire to live the best life possible with and in spite of the challenges that CHD may bring our way. To me, that is the ultimate display of strength and resilience.”

Fun facts: Misty is a former pediatric cardiac ICU nurse and outpatient case manager—and she and her husband LOVE Disney World. For them, it’s a place to escape the heaviness of the world, make memories, and enjoy great food!

Thank you, Misty, for continuing to use your voice and uplift the CHD community.

02/08/2026

Get to know Janee!

Janee is a fierce advocate for the ACHD community and has been involved in multiple research projects as well as CHD organizations. Let's here a bit from Janee about life with CHD and much more!

What has living with CHD taught you about yourself?
Growing up with CHD meant learning pretty early that my body worked a little differently. There were moments when I had to slow down, sit out, or listen more closely to what my body was telling me sometimes before I fully understood why. Over time, that taught me patience and self-awareness, but also resilience. I learned that strength isn’t always pushing through; sometimes it’s knowing when to pause and speak up for yourself. Living with CHD has shaped how I move through the world with empathy, perspective, and a deep appreciation for the life I get to live.

What’s something you wish more people understood about living with CHD as an adult?
I wish people knew the mental impact of living with CHD as an adult. Just because we have lived with it our wholes lives doesn’t mean it gets easier to deal with everything that we have to live with. The new symptoms, the worsening heart, the uncertain future, all of it.

If you had a totally free day, how would you spend it?
If the weather is nice, I would be outside hiking with my dogs. On cold days or bad weather days, I would be inside wrapped in blankets watching a true crime documentary

Thanks Janee for sharing your heart with the community!

02/07/2026

Meet Sheyenne!

“Growing up as a CHD patient made healthcare feel familiar—but it also showed me how much a compassionate care team can change someone’s life.”

Today, Sheyenne works as a cardiac sonographer in the same hospital where her CHD was first discovered before she was born. She brings a unique perspective to her work—understanding what it’s like to be on both sides of the ultrasound screen—and strives to help every patient feel safe, seen, and supported.

When explaining her CHD, she says:
“My heart has been doing life on ‘hard mode’ since day one.”

And outside of healthcare? Her dream trip is Australia—mainly for the animals. 🐨🦘

We’re honored to share voices like hers this CHD Awareness Month.

02/06/2026

CHD Awareness Week begins tomorrow. All week long, we will be highlighting the stories of ACHD patients whose lived experiences continue to shape this community. We can't wait!

02/02/2026

Every action, big or small, helps build awareness and move our community forward.

If you had to pick just one way to raise CHD awareness this month, what would it be?

02/01/2026

Heart Month is here.

This month, we’re focused on one thing: amplifying ACHD voices because real change starts with lived experience. By bringing awareness and centering patient stories, we can help shape a stronger, more informed ACHD community.

As CHD Awareness Week approaches, we’ll be sharing all things CHD and highlighting voices of ACHD patients who have navigated this world for years. Their experiences matter, and as this population continues to grow and live longer, those voices help fuel meaningful change.

We can’t wait to share these stories of impact.

Empower My Congenital Heart

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