High Impact Philanthropy: Erin Santos-Primis Of Isabella Santos Foundation On How To Leave A Lasting Legacy With A Successful & Effective Nonprofit Organization
An Interview with Karen Mangia
Reach wider.
Be consistent.
Listen well and seek advice from others.
Work smarter not harder.
Take mental breaks for yourself.
For someone who wants to set aside money to establish a Philanthropic Foundation or Fund, what does it take to make sure your resources are being impactful and truly effective? In this interview series, called “How To Create Philanthropy That Leaves a Lasting Legacy” we are visiting with founders and leaders of Philanthropic Foundations, Charitable Organizations, and Non-Profit Organizations, to talk about the steps they took to create sustainable success.
As a part of this series, I had the pleasure of interviewing Erin Santos-Primis.
Meet Erin Santos-Primis, a beacon of hope in the realm of pediatric cancer philanthropy. Erin has been in the nonprofit sector for 17 years now after starting the Isabella Santos Foundation (ISF) in 2007, the same year of her daughter Isabella’s diagnosis. Erin’s journey, marked by the loss of her daughter, birthed a mission that transcends traditional fundraising — as the President and founder of the Isabella Santos Foundation (ISF), Erin has worked tirelessly to improve rare pediatric cancer treatment options; more crucially, to organize and implement fundraising moves that are bigger than lip service.
Thank you for making time to visit with us about a ‘top of mind’ topic. Our readers would like to get to know you a bit better. Can you please tell us about one or two life experiences that most shaped who you are today?
Absolutely. While I know I’m here to share my story and insight, I do think when people first hear my name — they know me either as Isabella’s mom or Blair’s wife. And I love that — because holding those two roles have been two life-defining moments for me.
On March 9, 2005, I welcomed my daughter and first-born, Isabella, into the world. I knew early on that Isabella was bold, outgoing, and a bright light to all those around her. She loved making new friends and putting on a show. Raising Isabella was everything I could have dreamt of as a new mom. I loved it so much that I gave birth to Isabella’s doting little brother, Grant, only two years later.
Everything was about to change for our family — but not in the way I’d expect.
At just two years old, Isabella began to experience aches and pains atypical for a toddler. An abnormal blood test led to results a parent never wants to hear: Isabella had Neuroblastoma, a rare form of pediatric cancer. Her chances of survival were approximately 40%.
With fewer than 700 cases in the United States, treatment options and information were limited. I had to be proactive, do my own research, and fiercely advocate for my daughter. I challenged what was put on the table every step of the way, no matter how provocative or impossible my proposed solutions seemed. I was deep in the trenches for Isabella, fighting more battles than one.
My family traveled between home, that being Charlotte, North Carolina, and New York’s Memorial Sloan Kettering Cancer Center to receive care. As a mother of two, I was pouring everything into Isabella and her treatment while simultaneously providing support and love for Grant. I was moving so fast and moving backward at the same time, hitting roadblock after roadblock. It was exhausting, but I persevered, eventually reaching a summit where I needed to rally support, raise awareness of my mission, and most of all — to make things happen.
In 2007, the same year as Isabella’s diagnosis, I founded the Isabella Santos Foundation (ISF) to turn my pain into action. With ISF, I realized I could make an impact in small ways that would culminate over time. We didn’t need $100 million right away — but we needed $50k to get new equipment. These milestones seemed small, but they meant a world of difference to families with kids with rare cancer and to the future of pediatric cancer care.
As I continued to fight, so did Isabella, her audacious spirit seeing her through until the very end. Despite countless treatments and five relapses, Isabella passed away in 2012 at only seven years old.
What I went through with Isabella has both filled my heart — and broken it. But today, 17 years after her diagnosis — I know why this role was given to me.
Second, meeting Blair eight years ago was not intentional. It started off because of Isabella — and a request for corporate funding for the Isabella Santos Foundation. But we both quickly realized there was more to our connection than a shared passion for making an impact. This began the next chapter of my life with Blair — and the blending of our family.
I opened up myself, and my son, Grant, and daughter, Sophia, to a new chapter when I married Blair Primis in 2022. Our blended family now includes children Avery (22), Fletcher (19), Brady (17), Grant (16), and Sophia (13). Together we are involved in other organizations including the Community Blood Center of the Carolinas, Make-A-Wish Foundation, and Ronald McDonald House.
You are a successful leader. Which three character traits do you think were most instrumental to your success? We would love to hear a few stories or examples.
First, I don’t often like to equate my position with success. Yes — we have made an incredible impact with nearly $9 million raised, but our work is FAR from over. So to me, success is always about doing more — going father — giving greater. Success is an ongoing journey rather than a destination. At ISF, there is an underlying culture of continuous improvement and innovation. I don’t settle, and that is probably what most defines my character. All that being said, if I had to pick three characteristics I’m going to go with: blunt, realistic, and motivated.
I’ve been told I am direct; I know my expectations are high; and because of that I’m relentless. For instance, when faced with critical decisions about fundraising strategies or allocating resources, I have to prioritize transparent conversations.
This work is far from easy — but I wouldn’t change it. Those researching treatments for rare cancers for kids — and the families walking this journey — also have to be relentless and realistic in their work. There is no sugarcoating the challenges we all have faced — and will face. I’d rather recognize that and set the tone from the start.
The non-profit landscape is rife with challenges, but I have found this fuels the determination needed to navigate the complexities of our work. Most peers in this industry of non-profit work are described as compassionate, optimistic and selfish. Perhaps I’m some of that some days — but I think my unique character traits is that I don’t have to lead there. My motivators might be different than most — and my tactics are likely different too, but I am motivated nonetheless.
What’s the most interesting discovery you’ve made since you started leading your organization?
Unfortunately, there is a paradoxical nature of generosity within the non-profit community, that being the people who are meant to give the most, give the least, and those that should give the least, give the most.
Sure, as non-profit leaders we have donor tools that can help us predict giving and understand opportunities at hand. But I’ve also found that true, meaningful personal connections — and meeting people where they are at — fosters the best relationships.
Asking for financial support is a challenge that never gets easier for me. Whether approaching friends, family, colleagues, neighbors, or even strangers, the act of seeking contributions is inherently uncomfortable. It’s about understanding individuals on a personal level, appreciating their unique stories, and aligning their passions with our mission. In these instances, the act of asking becomes a catalyst for shared purpose and collective impact.
The journey of fundraising is not just about financial transactions; it’s a shared commitment to making a meaningful difference in the lives of those we serve. You just have to start by asking.
Can you please tell our readers more about how you or your organization intends to make a significant social impact?
ISF began with a $7,000 fundraiser in 2007. Since then, we have raised nearly $9 million, expanding research and aiding families impacted by pediatric cancer. Partnering with Atrium Health and Levine Children’s Hospital, ISF led clinical trials and established vital therapies. Our donations initiated groundbreaking programs, including the Global Rare Pediatric Cancer Program and the Isabella Santos Rare and Solid Tumor Program.
From this foundation, a new project is now emerging with a goal of uniting children’s hospitals in the Carolinas to fight rare pediatric cancers. Building on ISF’s legacy, the project aims to impact more lives and accelerate pediatric cancer research, aspiring to touch thousands of children across the region.
ISF’s journey isn’t just about an end — it’s a new beginning, a source of hope for families in need.
What makes you feel passionate about this cause more than any other?
It started with Isabella — to help her. To try and save her. But it grew to be something much greater.
Without naming names, could you share a story about an individual who benefitted from your initiatives?
The first story that comes to mind is a four-year-old girl from India. Diagnosed with High Risk Metastatic Neuroblastoma in May of 2022 at just two and a half years old, she has not had a ‘normal’ or ‘easy’ childhood by any means. Seeking immunotherapy treatment at the Rare and Solid Tumor Program at Levine Children’s Hospital, a facility made possible by ISF donations, she gets treatment not readily available in her home country which has increased her chances of survival immensely.
In May 2023, the girl was able to start a two year clinical trial. As we hold onto hope for this little girl, it has been heartening to hear from members of her family about the positive impact that ISF has had on their experience. The family was told their child’s chances of survival were 70%, and as any family does, they are embracing and living for that 70%. Her mother has mentioned to us that her daughter has managed to live well with that 70% through this trial, through the work of our foundation, and that right there is reason enough to keep going in our efforts. More on ISF’s contributions and this particular story can be heard here.
We all want to help and to live a life of purpose. What are three actions anyone could take to help address the root cause of the problem you’re trying to solve?
We can all give something, AND, I believe we can all give greater. That doesn’t always mean financial giving. It means thinking about what you can do at that moment. In your daily routine. How can you bring the mission of ISF into your life so it’s part of you. I believe giving greater can also be nearly effortless. It doesn’t have to be this hard — let’s work smarter, not harder to make this impact.
So to do that, here are three ways:
One, give greater… consider where your gift goes. There are many opportunities to donate and address pediatric cancer, but giving doesn’t always have to be financial! It can also be about thoughtful contributions, and ISF presents opportunities that allow your dollar to go further.
Two, open doors…share our story. We are small — we don’t know everyone. But doors that are opened can lead to greater opportunities. Some of our best and longest donors came to us through connections and referrals. By simply sharing our story or extending an invitation to join a cause-related event you help us expand our reach.
Third and final, be an advocate for us. It’s hard, hard work. Give us the benefit of the doubt. We won’t always get it right — and neither will you. Help advocate for our work — learn about what we are doing, and spread the word.
These actions collectively emphasize the idea that giving greater can be a part of everyday life and can be achieved with thoughtfulness, collaboration, and advocacy. Working smarter, not harder, is the key to making a meaningful impact in addressing the root causes of the nonprofit world.
Based on your experience, what are the “5 Things You Need To Create A Successful & Effective Nonprofit That Leaves A Lasting Legacy?”
I think there are 500 things a nonprofit needs to get right, but here are my top five:
- Reach wider.
- Be consistent.
- Listen well and seek advice from others.
- Work smarter not harder, and finally .
- Take mental breaks for yourself.
My first point, reach wider, is about finding a way to meet donors where they are. For ISF, we are hosting events through a variety of formats. The ability to adapt and diversify our events ensures that our organization engages with a broader spectrum of donors. We organize events that address the cause versus the person hosting them, which we have found to be way too common a theme amongst non-profit led happenings. We’ve made it so ISF events are fun and celebratory, to truly encapsulate Isabella’s zest for life and connect deeply with the community. Our first signature event of 2024 is coming up in March, “A Speakeasy Soiree,” which will be a 1920s themed party with hor d’oeuvres, live music, and a silent auction. I’ll also be giving a special announcement on how we plan to impact thousands more children each year and how you can make history with us. If you are local to Charlotte, we would love to see you there!
My second point, be consistent, is all about honing in on your message and then repeat it, repeat it, repeat it! ISF consistently communicates its mission and goals across various channels. Whether through social media, newsletters, or events, the organization ensures that the core message remains clear and resonant. This ultimately makes it easier for donors and supporters to understand and remember the cause they are contributing to.
Third, listen well and seek advice from others relates to how there is no need to constantly try and reinvent the wheel. ISF recognizes the value of learning from others in the non-profit sector. Seeking advice, collaborating with experienced partners, and building a network of supporters has been instrumental. By tapping into the collective wisdom of those who have navigated similar challenges, ISF has gained insights that help streamline operations, improve efficiency, and avoid common pitfalls. This collaborative approach contributes to a stronger, more resilient organization.
Fourth, work smarter, not harder, touches on the resource constraints nonprofits often face. ISF focuses on working smarter and maximizing our impact with the limited resources we have been given. A big one for us is strategically allocating funds where they can make the most significant difference. By adopting an efficient and strategic approach, we’ve worked hard as a foundation to ensure every resource contributes meaningfully to the cause, and therefore we are optimizing our overall effectiveness.
Last, but certainly not least, take mental health breaks for yourself! To leave a lasting legacy requires endurance. Don’t sprint the entire journey — treat it as a marathon and know your race might never end. So take the time to rest along the way. It’ll add muscle for when you jump into your next leg.
How has the pandemic changed your definition of success?
2020 was also not an easy feat due to the pandemic. At that time, our events obviously came to a standstill, which left my team questioning how we were going to continue to raise money. From this I learned something very powerful, that being how people didn’t necessarily need to be entertained; they just wanted to give. It taught my team and I the importance of asking and not always expecting something in return. The resilience and generosity displayed during the pandemic demonstrated that, even in the absence of traditional events, a community united by a shared cause can step up and contribute.
How do you get inspired after an inevitable setback?
For me, setbacks are not just roadblocks; they are opportunities for something greater to come from it. I’ve had SO many setbacks, and this last year was particularly a tough one for a number of reasons I’ll get into another time. So, when setbacks occur — and they often do — I draw inspiration from the lessons of the past. I remind myself that, even in challenging times, there’s an opportunity for something greater to unfold. It’s a shift in perspective — from seeing setbacks as obstacles to viewing them as catalysts for innovation, adaptation, and a renewed sense of purpose. This mindset allows us to find inspiration, strength, and a path forward, no matter the obstacles we face.
We are very blessed that very prominent leaders read this column. Is there a person in the world who you would like to talk to, to share the idea behind your non-profit? He, she, or they might just see this, especially if we tag them. 🙂
MacKenzie Bezos. As an esteemed philanthropist, she has undoubtedly changed the landscape for other non-profit leaders such as myself. I’d love to sit down and get her perspective on some effective strategies for navigating the evolving landscape of non-profit work. MacKenzie has shown a deep commitment to using her resources to make a meaningful difference in various social issues, which leaves me eager to hear her insights/best practices for leveraging resources and creating sustainable impact.
You’re doing important work. How can our readers follow your progress online?
Your support and interest in the work ISF is doing means a lot to us. To stay updated on our progress you can follow my personal LinkedIn as well as ISF’s. Our official website, isabellasantosfoundation.org, also has the latest news, updates, and detailed information about our mission, programs, and achievements. Here you can subscribe to our newsletters for periodic updates directly delivered to your inbox. Last, connect with us on Instagram, @theisfoundation, for real-time updates, stories, and engaging content!
Thank you for a meaningful conversation. We wish you continued success with your mission.
About The Interviewer: Karen Mangia is one of the most sought-after keynote speakers in the world, sharing her thought leadership with over 10,000 organizations during the course of her career. As Vice President of Customer and Market Insights at Salesforce, she helps individuals and organizations define, design and deliver the future. Discover her proven strategies to access your own success in her fourth book Success from Anywhere and by connecting with her on LinkedIn and Twitter.
High Impact Philanthropy: Erin Santos-Primis Of Isabella Santos Foundation On How To Leave A… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.