A Grateful Heart Is What Fuels Change


For a lot of change making organizations, it can seem like loss and pain are the driving force behind their work. So many nonprofits and NGO’s start because their founder lost someone they love to cancer, to heart disease, to suicide, to war…the list goes on. My own organization, Big Love Little Hearts, is in honor of my sister, who passed away at just 37 days old from an undiagnosed heart defect.

But viewing loss as the impetus of change misses the mark. What really fuels changemakers is gratitude and grace. Being so thankful for the time you had with someone that you’re driven to give the gift of time spent with loved ones to others. Being so thankful for the advantages you’ve had that you want as many people as possible to also have them. Being grateful for your education, the food on your plate, your mentors, the support of others during a hard time….these are the things that truly make the world grow.

Hospitals grow because the people who received excellent care there donate so that others may receive the same. Scholarships are funded by people who are grateful for what education has made possible in their lives. Organizations like Imerman Angels are built by people who are thankful that they had the support they needed while fighting cancer. Organizations like mine are funded by parents who know how lucky they are that their children were born in a country where lifesaving care is abundant.

I’ve been fortunate enough to meet a lot of changemakers in my years as one, and the common thread among all of them is not a bleeding heart…it’s a grateful heart.

We are all meditating on the things we’re grateful for during Thanksgiving. This Thanksgiving what I am most thankful for is simply the act of gratitude, because that’s what is improving and often saving the lives of millions of people all around the world.

If your heart is thankful this week, please consider sharing your love with a grateful photo or gift over at Epic Thanks (an organization whose entire philosophy is that love and gratitude are all that’s needed to change the world).


Answering the Call

The last few days have been some of the hardest in my cause community since I started working in this space. In just the last 24 hours, nine I children I know died from their heart defect. Nine. I’ve had weeks where I’ve known 14 kids that lost their battle with their heart defect, but nine in one day is a record. A painful, terrible, paralyzing record. If there was ever a day where I wish I could walk away from the work I do – today is it.

But I can’t walk away, because this is not a job – it is a calling.

I didn’t always know this was my calling. My sister died when I was 10 years old from an undiagnosed heart defect. It affected me and my family profoundly, but I didn’t decide then that I was going to spend the rest of my life trying to save other families and other children from that fate.

I grew up, went to college and ended up a jury consultant. While on a business trip I met a little girl at a golf tournament. She was hitting farther than the grown men on the course and when I went to tell her how incredible I thought that was, I found out that was hardly the most incredible thing about her.

I noticed a heart with two stick-figure kids on either side of it embroidered on her golf bag and when I asked about it she told me she had two open heart surgeries before she was two years old and that it was her mission to raise one million dollars to fund research for children with heart defects. Did I mention she was 10 when I met her?

I made a donation to the non-profit she was raising money for, The Children’s Heart Foundation, soon after and soon after that joined their Board. I started volunteering at their office and while I became more and more invested in the heart families I was meeting, the extraordinary research we were funding and what that could mean for children born decades after my sister….that piece of the heart defect world was not my calling.

One day I got a letter from a father in Ghana whose son needed heart surgery. No hospital in Ghana had the equipment and no surgeon there had the necessary skills. His son was dying and he was sending letters to every organization he could find that had anything to do with children and hearts.

His letter was desperate. I didn’t know how to help him but I had a computer and I had access to a Board full of the finest congenital heart surgeons in the world – these were things he didn’t have. It only took me a few days to find a surgical mission team going to Sudan and only a few more days to figure out how to get him from Ghana to there.

That’s when my calling found me – but it’s not when I answered the call.

I got letters like that frequently, but it wasn’t my daily work and I was glad because most of the time it took a lot longer than a few days to find help for someone. Many times it took a month or more and sometimes help was simply unable to be found. I spent whole days crying when that happened and countless sleepless nights hoping that one more email or phone call would turn up some new solution.

It was the thing I was most passionate about spending my time on, but I was terrified.

I remember the day my sister died like it was yesterday. The almost 27 years that have passed since then have done little to dull the pain of it. I watched a part of my mother and father die with her that will never – and can never – come back.

The stakes were very personal to me. I knew exactly what would happen if I couldn’t find help for a child who needed it. I knew how forever changed and incomplete their family would feel. Every time I couldn’t find help for someone – every time a child died – I was taken back immediately to the day my sister died and all the unbearable pain that came along with it.

It took me almost two years to get over that fear and actually answer my calling. My fears weren’t unfounded. When I left Children’s Heart Foundation and started my own non-profits, the amount of letters I got from families who needed help grew, but the amount of help available did not.

The horrible truth is that on average, every other day I know a child that has died from their heart defect. That’s not just a horrible truth – it’s a hard and crushing truth that sometimes makes it hard for me to breathe, eat, sleep or do any of the other things a normal human being does to take care of themselves.

For a brief moment last night in the aftermath of nine lives lost in a day, I wondered if I could really do this anymore. I wondered what to do period because there’s no manual that tells you how to deal with that.

Good friend Megan Strand reminded me exactly what to do:

“You take a deep breath and know that you have a calling on this earth and nine more angels to guide you.”

If this wasn’t my calling I couldn’t put myself through another night like last night again. But it is my calling. And because I answered it, the wonderful truth is that on average, every other day I get lifesaving help to a child with a heart defect.

Most everyone I know who works in nonprofit is there because they answered their call. Have you answered yours?

Putting On Your Own Oxygen Mask First

When you get on any airplane, before takeoff a flight attendant goes through safety procedures and tells you that in case of cabin pressure loss oxygen masks will be dropped. They instruct you to put your own mask on before helping others.

I fly a couple times a month on average. I’ve never once seen a passenger raise their hand and object to this idea. Who would? The fact that you need to be breathing in order to help your fellow passengers isn’t a hard piece of logic to digest.

Yet as non-profit leaders we overwhelmingly don’t do this. We think it’s our duty to work 20 hour days without eating. To go on less than 4 hours of sleep for weeks on end, give up going to the gym, the doctor, seeing our family and friends…or any other part of the outside world in the days or weeks leading up to big campaigns.

We are responsible for delivering impact into dozens, hundreds or thousands of lives yet we’re not taking the time to make sure we’re nourished enough to do so.

I’m not writing this from some high horse, urging you to follow my exemplary footsteps. I’ve had a horrible time internalizing this idea in the years I’ve devoted my life to making change.

Last fall I was immobile for almost a month from ignoring my own needs in exchange for my mission’s. I didn’t listen to what my body needed, which certainly wasn’t to stress my injured back by 10,000+ miles of travel and multiple speaking engagements in less than a week.

Did my organization get some great things because I didn’t listen to my body? Sure. But I also had to leave one of our fundraisers because I couldn’t stand I was in so much pain. I was at less than 25% capacity for work output and my days were cut in half to accommodate my physical therapy schedule for an entire month. That doesn’t seem so great for my non-profit or the children I work so hard for.

Being a good leader means not being a martyr. We all know this in our heads – it’s time to internalize it in our hearts.

What do you do to take care of yourself?

*This post also appears inside the #NPZen Sandbox at 501 Mission Place. Want to poke around there? New subscribers to our free newsletter get one month of premium membership free with no-strings attached.


Hope Is Not A Strategy


Yesterday my cause community suffered a huge and very unexpected loss in Steve Catoe, an adult congenital heart defect (CHD) survivor, outspoken advocate, blogger and in the years I’ve been in this cause space, someone who came to be a dear friend. His passing has been difficult for many in the CHD world. We want to believe that successful surgeries as a child mean a long life ahead, but we know better: sudden cardiac arrest can happen at any time for a CHD survivor. We want to hope that by the time heart kids become adults we’ll have found a cure, but hope alone is not going to make that happen.

Steve’s second to last blog post was a plea to our community: hope is not a strategy. He asked us to come up with a plan, a goal and a deadline.

I’ve been living in that mind frame myself a lot these past few months, knowing that if we don’t have a clear vision, our missions will never be anything more than a band-aid. As a result my organization is changing almost everything about our programs in 2011. Each step we take will be one step closer to a solution.

Our mission is to give lifesaving surgery to children in developing countries with heart defects, but my vision is to work myself out of job: to change the landscape so that all children with heart defects have access to the care they need no matter where they live in the world.

Do I have a plan to get there? You betcha. A measurable goal? Absolutely. A deadline? Heck yeah.

I challenge you to do the same.  What’s your vision for your cause? How will you get there? What’s your plan? What’s your goal? And most importantly – when is your deadline? (hint: “someday” and “in our lifetime” are not deadlines)


This Is Personal: Moving from Mission to Vision

My sister died 26 years ago today from an undiagnosed heart defect. In my first video blog, I talk about how that loss has moved me to change our course at Big Love Little Hearts away from that of a mission based organization to that of a vision based one, steering toward lasting solutions to the global CHD (congenital heart defect) problem.


What Steve Farber Taught Me At SOBCon (part two)


I just spent an entire post talking about Steve Farber‘s concept of making someone Greater Than Yourself, so why do I need to blog about it again?

In my last post I was talking about consciously making someone, or a whole group of someone’s, Greater Than Yourself. In this post I’m suggesting that you already are and that you should start being aware of it! If you tweet a lot, have a blog, have a facebook following, have any kind of following…you are already making someone greater than yourself.

You are influencing the people who read your blog posts religiously. You are informing the decisions of the people who have you on twitter lists. You are shaping the people who interact with you on facebook. Just because that’s not your intention doesn’t mean it’s not true.

A few things happened to me right before, during and after SOBCon that made me realize I needed to be a little more thoughtful in my role as a leader. Right before the conference started I got an email from a student on the east coast who was getting her MBA in Non-Profit. She was writing to ask for my advice and help starting her non-profit but she began her letter thanking me for my blog and informing me what a role model I was to her and her classmates. She told me what an asset my articles were to her and to her class and how necessary it was to have a positive example of a woman doing so much in the non-profit world. These same words were repeated to me by students I met here in Chicago shortly after SOBCon during a mentoring program I participated in.

I’m not sharing this to pump my own ego but because I was floored to realize that anyone outside my close circle of friends and colleagues read my blog or my tweets! I was leading groups of future change-makers and didn’t even know it. Being at SOBCon, and Liz Strauss in particular, made me not just accept that I was a leader in my peer group but embrace being a leader and commit to doing so thoughtfully with trust and purpose.

When thinking about Steve’s call to make someone Greater Than Yourself I realize I need to take that attitude into everything – and every way – I communicate. Every status update, every tweet, every blog post, every video is an opportunity to inspire and share knowledge.

I challenge you to do the same. The moment you make yourself part of the social media fabric by creating a blog, a twitter handle, a facebook profile, a youtube channel, etc…you’re making yourself someone else’s role model. The next time you say something to your audience do it with the awareness that you have the potential to make them greater than you. You have the potential to help them achieve their own version of greatness. You have the opportunity to inspire them to do the same for someone else.

To that end I want to remind all my readers:

YOU can change the world. YOU can start now. Build Community. Build Change.


About Me…or Who am I and Why Should You Care About What I Have to Say?

I truly believe in philanthropy as a way of life. Giving is a part of who we are as human beings…the act of giving, small or large, instills great happiness in our hearts and it’s what allows us to effect positive change in an individual, an entire country or transform the world at large.

I am the Founder of four non-profit organizations (Little Leo Foundation, One In One Hundred, Big Love Little Hearts and The 4F Club – Fabulous Female Foundation Founders) and when I’m not busy running them I am a passionate advocate, volunteer and Board Member at many others.

A former jury consultant, my life changed while golfing on a business trip when I met 10 year old MacKinzie Kline. Noticing a cute logo on her golfbag – a heart with two stick figures on either side – I asked her what it was about and she explained that she had two open-heart surgeries by the time she was two years old and that it was her mission to raise one million dollars to fund surgery for children with congenital  heart defects as spokesperson for The Children’s Heart Foundation. Needless to say I was very impressed that a 10 year old would devote herself to such a cause. Beyond merely being inspired by Mac, I was inspired by the cause as my sister passed away from an undiagnosed heart defect when she was 37 days old. I promised her I would look up the organization when I got home and make a donation.

It just so happened that the national office of The Children’s Heart Foundation (CHF) was within an hour of where I lived so I contacted them about both making a donation and volunteering. To make a long story short, one month later I was on the Board and a week after that I started volunteering a few hours in their office. That quickly turned into me leaving my profession and volunteering full time and I haven’t looked back since! Through a generous grant from Medtronic I got a world class education in Non-Profit Management and Marketing from Northwestern Kellogg as I moved from volunteer Board Member to staff as CHF’s Director of Development to Founder of my own NPO’s.

This blog is meant to be a resource to others rocking their own version of changing the world as well as a document of the joys, heartaches, difficulties and blessings of starting and running a non-profit (or four). My ‘expertise’ comes in the form of experience and often from my own missteps – I am happy to let you learn from both my mistakes and triumphs!

I am a breast cancer survivor, mom to an incredible boy and forever home to more than a few rescued animals. I love my family, friends, life, travel, music, food, wine, college sports and the world at large as much as I love giving and sharing.

Little Leo Foundation provides comfort items to children in the Chicago area who have just had open heart surgery.

One In One Hundred is an advocacy group whose goal is to create a future where every newborn is screened for America’s #1 birth defect – congenital heart defects.

Big Love Little Hearts helps children in developing countries get the lifesaving surgery they need to repair their heart defect.

The 4F Club is a Non-Profit for Non-Profit’s, fostering a community of collaboration that allows all of us do our missions better and faster.

You can reach me at:

erosenberg@littleleo.org, erosenberg@oneinonehundred.org, erosenberg@biglovelittlehearts.org or erosenberg@the4fclub.org

Or find me on twitter: http://twitter.com/charityestrella