Estrella Rosenberg

Archive for the ‘Congenital Heart Defect’ 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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Super Sized Brand-Building on a Value Meal Budget

In Awareness, Best Practices, Brand Building, Communication Strategies, Congenital Heart Defect, Non-Profit on March 3, 2011 at 8:02 pm

 

 

During Mardi Gras last year Big Love Little Hearts wrapped up Congenital Heart Defect Awareness Week with a trip to New Orleans: Big Love in the Big Easy.

Since Mardi Gras is going on as I type I’m remembering how much fun I had there but I’m also remembering how many valuable lessons I can share with you from the how, what and most importantly – why – we did what we did.

When you’re a small organization and especially when you’re a new one, every last dollar counts. While your impulse is to use every dollar raised for program and mission, you need to invest in brand building and awareness raising. What matters is that you’re smart in how you spend it and maximize the opportunities you choose to the nth degree.

As an 8 month old organization (our age at the time of Mardi Gras last year) we had four concerns: building good programs, funding those programs, building our brand so the public associated us with the cause of heart defects, and raising awareness of heart defects so people knew they were a problem that needed fixing.

I chose to do a brand-building and awareness campaign at Mardi Gras because it fulfilled all four of those.

We had interest from several students at Tulane to start a fundraising chapter for us in New Orleans so I had already planned on being there at some point. I really like to maximize my travel expenses and whenever possible build in multiple purposes – that’s what I did here.

I arranged meetings with the students and appointments with several venues and potential partners for the days following Mardi Gras to make it a worthwhile trip on the fundraising side.

On the program side, I made appointments with pediatric cardiologists and cardiovascular-thoracic surgeons who could help us accomplish the meat of our mission: delivering lifesaving heart surgery to children in developing countries.

The last two goals, brand-building and awareness, are why I chose to go to New Orleans during Mardi Gras though.

When raising awareness for your cause the chief goal is always to raise that awareness among people who don’t know about it. Brand-building has the same goal (along with increasing brand position among the people who already know about your cause).

Both these share a similar problem: reaching people on a broad basis outside of a narrowly confined demographic can be expensive. It’s a challenge to find an event, venue or platform that encompasses people from all over the country and from all walks of life that isn’t already inundated with cause messaging (like facebook).

Mardi Gras is filled with people from every corner of the country (and beyond!) and people from every demographic you can think of.

My cause, heart defects, has an incidence of 1 in 100. Few of the nearly 40 identified defects have genetic links and do not correlate to any demographic. For us, everyone is our demographic.

We brought 1500 Mardi Gras beads and a couple hundred t-shirts with our branding to New Orleans with us to give away during the parades. While that alone would have exposed us to a large and diverse audience, we did some things that really amplified our impact and made the dollars we spent wiser.

 

 

 

Smart Branding.

We tried to make our beads unique. They were red with a big heart pendant where we printed our log0 and our web address. They needed to be unique enough for people to want to take home with them where they might look us up online.

We printed our logo and web address on the backs of our t-shirts. People spend more time behind someone than they do walking towards them. Our t-shirts are made of soft, high-quality cotton and fit well…people like to wear them, and they like to wear them most to the gym – where someone might spend up to an hour behind them on a treadmill staring at our logo and web address.

 

Talking To, Not At.

We didn’t stand on a balcony or a float and throw beads and t-shirts at people. We put the beads on people’s necks for them. We told them who we were. They asked us what we did and who we helped. We had conversations.

Similarly, we had conversations with the people we gave the t-shirts to. Having to ask them what size they’d need started a dialog and every last person who got one wanted to know more about us.

Just by having conversations we created an experience for them that differentiated us from the hundreds of other businesses and groups  throwing beads at them – this gave them a reason to remember us and talk about us to their friends.

 

Being Different.

Besides differentiating ourselves by engaging with the crowd, we were the only cause there giving out beads and t-shirts.

When you do something  no one else is doing, even when it’s as simple as giving out beads at a parade, you let people know you’re forward thinking. Never underestimate the importance of this: innovation and out of the box thinking are key to solving social problems. Donors want to see you think this way everywhere.

 

We did the most we possibly could with this opportunity and it paid off. We saw a huge spike in page visits and newsletter sign-ups in the days following Mardi Gras and started receiving donations from new supporters immediately.

How can you maximize your brand-building and awareness spending?

Hope Is Not A Strategy

In Congenital Heart Defect, Non-Profit, Personal on November 30, 2010 at 8:50 am

 

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

In Congenital Heart Defect, Non-Profit, Personal, Pulse Oximetry, Storytelling, Vision on November 16, 2010 at 1:38 am

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.

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