Estrella Rosenberg

Archive for the ‘Miscellaneous’ Category

Answering the Call

In Congenital Heart Defect, Miscellaneous, Non-Profit, Personal on April 26, 2011 at 6:30 am

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?

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Bigotry & Racism in Philanthropy

In Awareness, Developing Countries, Miscellaneous, Non-Profit, Partnerships on July 21, 2010 at 10:10 am

I’ve been on sabbatical this summer to spend time with my little boy but I read a blog the other day that I’ve been sick over. My non-profit Big Love Little Hearts helps children in developing countries with heart defects get lifesaving surgery. We collaborate with other groups to get this done and one of them, ICHF, was set to travel to Iraq in just a few weeks to work with another, Preemptive Love, to perform surgery on some 30 children.

Nothing about that sounds sickening yet, I know – it’s wonderful in fact. Except it might not happen anymore. Not because it’s not safe enough for a U.S. team to travel there, not because the right equipment couldn’t be donated or because the right doctors wouldn’t volunteer their time. Because of bigotry and racism, plain and simple.

An excerpt from the ICHF blog:

“Our team was due to go to Sulaymaniyah in the Kurdistan region of Iraq. We had been contacted by a foundation several months ago telling us they had $17,000 that had been given specifically for Iraqi children to be operated on. When we contacted the donor directly we were told that the funds were only for Sunni and Shia children, not for Kurdish children – and since we were going to Kurdistan the funds were no longer available.”

Their Founder goes on to say “Bigotry and racism have no place in this world…these two together have killed millions.” I couldn’t agree more strongly as I think all of us working in the non-profit community do. Need is a human condition. It is not bound by color of skin or language or geography.

What I don’t agree with is his next sentence: “Death is coming again to Iraq and this time the Four Horseman of the Apocalypse are Bigotry, Racism, Misunderstanding and Vindictiveness.” Why not? Because I know that this won’t sit well with you either. And you have fans and friends and followers and blogs and facebook pages.

I’ve never used my blog for a call to action before but today I am. Today I have to:

Donate $5 – Save Babies and Fight Bigotry (double karma points!)

Tweet this

Blog about it

Talk about it

Facebook it (did I really just use that as a verb?)

A few dollars, a few minutes…however you do it, I’d love your help standing up to the new Four Horseman of the Apocalypse. Children shouldn’t die because of racism.

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

In Miscellaneous, Non-Profit, Personal on March 27, 2010 at 6:28 am

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

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