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Mile 1 ✅

From my parents, in their own words:

“We were beyond excited when our firstborn arrived a little early. We had a healthy baby boy and were settling into our new routine as a family. At his first doctor’s visit, the pediatrician heard a heart murmur and sent us to a cardiologist. That’s when we learned he had a ventricular septal defect (VSD) and an atrial septal defect (ASD). He was admitted for observation and started on medication. We were brand new parents, and suddenly everything had changed. What did this mean for our son’s future?”

At two years old, when doctors recommended a heart catheterization, my parents sought a second opinion. They brought my brother to Mount Sinai, where they learned his ASD had closed. There was no need for intervention. His condition would just need to be monitored with annual appointments. Each summer, they’d go to New York City for a cardiology check-up and visit the Museum of Natural History.

“We knew how lucky we were. Sitting in the waiting room, we saw what other families were facing. We never took it for granted.”

Today, my brother is grown, thriving, and raising two incredible kids with his amazing wife. My parents have always said that what this taught them is simple but powerful: families must advocate for themselves. Ask questions. Seek answers. Never give up.

Action:I will create a story spotlight about early diagnosis and share it publicly to show what equitable care can look like when systems support families.

“Congenital heart disease is the most common congenital condition, affecting 1 in every 100 live births, of which ¼ need surgery in the first year of life to survive. Survivors with birth defects but without a timely diagnosis and surgical or medical treatment, face long-term morbidity and lifelong disability which compounds the health and economic woes of individuals, families, communities, and society as a whole.”

Mile 2 ✅

Three of my cousins live with type 1 diabetes. It has been part of their worlds for as long as I can remember. Meals, sports, sleepovers, school trips… everything was shaped by blood sugar checks, insulin, and careful planning. But what stands out to me most is not the condition itself. It is how much life they live. They are curious, smart, full of energy, and always doing something. They have played sports, traveled, taken on challenges, and done it all with so much heart. They are the coolest “kids”…(now adults) that I know.

Growing up, I saw how their whole family moved around it together. Everyone played a part. There were so many things quietly adjusted in the background, and so many moments where love just showed up. In routines, in preparation, in presence.

They have shaped how I think about resilience. Care is not just something that happens in hospitals or through medication. It is also the small things. It is emotional. It is practical. It is shared. It is family. It is community. And it deserves to be seen.

Action:I will co-develop a youth and young adult storytelling feature with others living with lifelong conditions, spotlighting strength and systemic gaps.

“NCDs in children, teens, and young adults are chronic conditions that start at birth or during childhood. They include congenital anomalies, especially congenital heart disease which is the most common occurring in 1 in 100 live births, rheumatic heart disease, type 1 diabetes, sickle cell disease, pediatric cancers, etc.”

Mile 3 ✅

Behind every diagnosis, there is someone quietly carrying the weight alongside their loved one. For my brother, for my cousins, and for so many others, it was my parents, my aunt and uncle, and the people around them who never looked away.

I watched my parents, aunt, and uncle carry so much with grace. They held questions and hope at the same time, learning how to care for children with serious health conditions while still making life feel safe and full. They never made it look heavy, but I know it was. Everything shifted so their kids could thrive, and they did it with love, steadiness, and unwavering presence.

They all encouraged me to dream big. To do something that mattered. And to believe that you can build a life and a career shaped by the people you love most.

Their strength is quiet, but it has shaped everything.

Action: I will work to ensure caregivers are reflected in the design of our upcoming tools, surveys, and trainings as partners.

“Scaling up care for childhood-onset NCDs, and especially the lifelong care approach, would benefit the entire NCD health system.”

Mile 4 ✅

My husband’s grandmother, Mommom to us and Babcia to my kids, lived most of her life with an undiagnosed heart condition. She had symptoms for years but never had a clear answer. She carried it quietly, focusing on caring for everyone else while her own health remained a mystery.

Her daughter (my husband’s aunt) lives with that same condition today.

These women have taught me so much about strength, especially the kind that goes unspoken. Their stories remind me that health is shaped by more than just biology. It is shaped by timing, by access, by who gets heard, and by what is passed down or left unsaid.

Action: I will help create a plain-language resource on congenital heart conditions across the lifespan for patients and families.

“Congenital heart disease is the most common birth defect occurring in 1 in 100 live births.”

Mile 5 ✅

Voices for PEN-PLUS is one of the most powerful communities I’ve had the privilege to work alongside. These are people living with chronic conditions in some of underserved regions of the world, and they are not waiting for permission to lead.

They are building, organizing, and advocating with clarity, courage, and love. They show up to global spaces, not just to be included, but to drive the conversation. Two of them sit on our board, including our vice-chair. They bring lived experience, deep expertise, and a clear vision for a better future.

Working with them and Global ARCH has reinforced the true impact made when people who live the reality are the ones shaping the solutions.

It has been an honor to meet and learn from each of these incredible leaders in small and big ways: NCDI Poverty Network, Apoorva Gomber, Rachel Gasana, Anu Gomanju, BPH, MA, MPH in Global Health , Ruth Ngwaro, Edith Mukantwari, Eunice Owino, Tinotenda Dzikiti, Moses Echodu, Arafa Said, and Emmanuel Kisembo

Thank you to The Helmsley Charitable Trust for supporting this incredible work at the NCDI Poverty Network

Action: Incorporate the voice of those with lived experience by empowering leaders with our upcoming advocacy training course and more.

“The Lancet NCDI Poverty Commission advocated for the expansion of the 30-70 age target to include people younger than 30 years and showed that the avoidable burden of disease and preventable deaths among the poorest billion in younger populations was due to a diverse set of causes among which congenital heart disease and sickle cell disease were most prominent.”

Mile 6 ✅

Some of the most meaningful friendships in my life have come through this work. These are people I never would have met otherwise — from different countries, different cultures, different stories. But we found each other in the middle of the same fight.

We’ve celebrated each other’s wins like they were our own. We’ve cried after losses that were too big to explain. We’ve been a phone call away when we need help with both small and big tasks.

Some of them have lost children. Some are living with conditions they still don’t have access to treatment for. Some carry entire communities on their backs. Some work endless hours to find new innovations to save lives. And somehow, they still show up with love.

These are not just colleagues. They are my people. They remind me that this work isn’t just strategy. It’s family. It’s heartbreak. It’s healing. It’s hope.

Many friends tagged here or pictured below but many more who I am incredibly grateful for.

Action:I will reach out to five people who have walked beside me in this work, not to talk about projects or deadlines, but to say thank you.

“NCDs in children, teens, and young adults are chronic conditions that start at birth or during childhood. They include congenital anomalies, especially congenital heart disease which is the most common occurring in 1 in 100 live births, rheumatic heart disease, type 1 diabetes, sickle cell disease, pediatric cancers, etc.”

Bistra Zheleva Katie Bales Amaya Saez Meg Didier Katie Kraft Amy Verstappen Carissa Ostrom Apoorva Gomber Rachel Gasana Anu Gomanju, BPH, MA, MPH in Global Health Disty Pearson Annette Imprescia Anna Fisk PhD RN CCRN Suchismita Halder, PhD Amy Leah Potter Ruben Ayala Bina Valsangkar, MD, MPH Natalie Sheneman Daphne Sorensen Rajwant Kaur Singh Frida Bjork Arnardottir Lene Osmundsen Jackie Boucher Jeremiah Mwangi Dominique Vervoort Eliana Monteforte Jennifer Kupiec Kerry McEnaney Global ARCH

Mile 7 ✅

Global ARCH is made up of more than 125 organizations in 52 countries. But it doesn’t feel like a network. It feels like a family.

I’ve witnessed people transform unimaginable grief into bold leadership. Parents who never saw themselves as advocates are now the voices of entire nations. Teenagers have become mentors. Clinicians are listening differently because a patient chose to speak up.

Every organization in this community was built by someone who lived it. They didn’t choose this path. It chose them. And they chose to turn it into purpose.

This work is hard. It is underfunded. It is often misunderstood. And it remains invisible to much of the world. But they keep going. And so do we. Because this is not about statistics or programs. It is about people. The ones we love. The ones still here. And the ones we have lost.

Global ARCH is the first alliance of its kind.

We are more than a community. We are a catalyst. We build the bridges that connect lived experience to the systems that shape lives: healthcare, research, policy, and industry.

Action: Together, we will continue to grow this family. And we will keep building the bridges until patient and family voices are not just heard, but truly included.

“Rheumatic heart disease (RHD) is a preventable non-communicable disease is endemic in many LMICs and considered the most common cause of acquired heart disease in children and young adults. At least 50 million people globally live with RHD and 350,000 die from it each* year. 96% of RHD deaths occur in LMICs*. 70% of RHD deaths affect people 25 years and younger*”

Mile 8 ✅

There are names I carry with me every day. Some are children who never got the care they needed. Some are young people whose lives ended far too soon. Others held on as long as they could and passed without answers.

They are not statistics. They are sons and daughters, friends and siblings, partners and parents.

I think about them in meetings where someone says this work is not urgent. I think about them when the weight feels too heavy. I think about their families who keep going, even in the absence of the ones they loved most.

This mile is for them. And for those who carry their memories.

Action: I will launch an awareness campaign to share their stories and demand the care they never received becomes the standard for everyone else.

“National governments and donors must not forget childhood-onset NCDs and invest more in preparing the health systems”

Mile 9 ✅

This mile is for the people living with these diagnosis everyday. The ones living with heart conditions, diabetes, and other chronic illnesses. The ones juggling appointments, medications, school, work, and everyday life often without anyone really seeing how hard it is.

It’s for the patients who get up and keep going, even when their bodies are tired and the system has already let them down. The ones who were born with these conditions or diagnosed as children, and now feel invisible in a world that was never built for them.

It’s for the families who give everything they have to help. Who make calls, ask questions, carry hope, and hide their own fear.

I have met so many people carrying so much. And still, they love. They lead. They hope.

They should not have to fight this hard just to be seen. And they definitely should not have to do it alone.

Action: I pledge that every training, campaign, and advocacy effort from Global ARCH will center the voices of patients and families, because no one should be invisible in the systems that shape their lives.

Congenital conditions “make up 8% and 10% of global under-5 and neonatal deaths respectively, making them the most significant NCD contributors to preventable loss in children.”

Mile 10 ✅

Behind every person living with a serious condition is a community holding so much. A parent. A partner. A friend. A sibling. A grandparent. A local advocate. A health worker. A quiet innovator designing solutions. Someone researching, reminding, coordinating, hoping.

They are rarely acknowledged, but they are always there. They are the ones learning to pronounce diagnoses, navigating health systems, staying up through the night, and showing up every single day.

These are the caregivers, the advocates, the leaders, the doers…the ones holding the weight that others cannot always see. They manage fear, frustration, and love all at once.

This community is the glue that holds lives together. And they deserve more than gratitude. They deserve to be seen, heard, supported, and empowered too.

And to our donors…a sincere thank you from the bottom of my heart. Your support doesn’t just fund programs. It lifts people. It builds capacity. It creates space for change. You stand with this community, and because of you, we can keep showing up for them every single day. You believe in us and in this work by making sure this community is not left behind.

Action: Send 10 emails to those in our community to thank them for being in this with us.

“without a timely diagnosis and surgical or medical treatment, face long-term morbidity and lifelong disability which compounds the health and economic woes of individuals, families, communities, and society as a whole.”

Mile 11 ✅

My kids changed everything for me.

When I look at them, I think about every family I have met through this work. Families who want the same things I do. A future that feels safe. A life that feels full. A system that does not make them beg for basic care and services.

I do this work because of them too. I want them to see that love and caring can turn into action. I want them to grow up believing that care is a right, not something only some people get.

They also remind me of something else. That rest matters. That joy matters. That the world we are fighting for has to be one we can actually live in and enjoy together.

And a very big thank you to my incredible husband. He is the one who makes it possible for me to show up fully in this work.

Action: take off next weekend upon arrival home to spend time with family ❤️

“Demographic changes in sub-Saharan Africa portend a growing number of births with 1.6 billion projected from 2021 to 2050. More births and better survival without effective prevention and treatment for birth defects translates into more mortality and disability” from congenital conditions.

Explore our shared advocacy brief, Child-Onset NCDs: Forgotten in the Global NCD Agenda: https://bit.ly/42ZACjw

I’m still working to reach my $1,100 goal for my 11 miles. If these stories moved you, I’d be honored if you helped me finish what I started. Please help me reach my goal 👉 https://lnkd.in/e4kP6XXv