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Congenital Heart Defects

Magic Numbers

by Dr.Mani on December 17, 2010

RE-TWEET IT!

I shared a message with my email subscribers. It was about my Magic Number.

My friend Shel Horowitz tweeted me some feedback about it. One point he made was the possible lack of confidence inspired by my mentioning (to a primarily U.S. audience) that we’d only raised around $135,000 since starting this effort.

Curious, I Googled the topic – and found this recent article in TIME.

“With 3.3 million registered NGOs, India’s nonprofit sector raises between $8 billion and $16 billion in funding every year.”

Hmm… that was interesting data. And then, I came to this startling statement.

“…of $2.15 billion in foreign aid recieved, around $680 million was used for organizational expenses.”

That’s almost 31% of the funds raised being spent on administrivia. (For comparison, my Foundation averages THREE percent!)

And that led me to think about constraints and hurdles I’ve faced in fund raising adventures over 7 years, which might make for an interesting blog post. Here it comes.

There have been many limitations in my efforts to raise money for helping children from under-privileged families receive expensive treatment for congenital heart defects.

The biggest among these were:

Credibility – Ten years ago, with no track record to point at, I had to rely on the trust of people (who had never even met me!) to support my fledgling efforts. Fortunately, enough of them cared to help make it happen… and bring us to this point where I can point at many smiling faces for proof.

Time – Until recently when I chose to make this project a full-time activity, I was juggling duties as Assistant Professor at a busy University hospital with managing a thriving online information business, leaving me severely hard-pressed for time to handle everything that needed attention.

Laws – Constantly changing and getting ever more restrictive (for legitimate reasons, to prevent money-laundering and terror funding), these made it increasingly harder to raise and transfer foreign funds into India.

Patient factors – Having a waiting list without adequate funding was impractical. So whenever funds became available, we went through a sequence of activities to find and bring in kids to undergo surgery. The lack of a structured process made this time-consuming and uncertain.

Transparency – Without popular 3rd party validation agencies with sufficient clout to have impact, getting ‘certified’ as a valid NGO in India was impossible. The few smaller ones had exceedingly complex application steps which would require a full-time staff member to deal with requirements. (One had an 86-page form just to apply for registration!)

Amid all this, I gamely battled on. Patched together a system that worked, even if not very efficiently, to raise funds and carry out 70 heart operations.

But suddenly, policy changes at our primary payment processor jerked the rug out from under us in July. Suddenly, the fragile edifice cracked and looked ready to collapse. It took a determined and focused phase of activity to cobble it back together – and a more permanent solution is being worked on as we speak.

From one perspective, seven years of action without leading to a rock-solid system to overcome all these hurdles seems to indicate a slacking off and waste of time, or misguided effort and lack of direction. And regardless of how harsh you or anyone else may judge me on this, I suspect it won’t be 10% as hard as I’ve been on myself.

But compared against the average Indian NGO which is often better staffed, organized and managed than my smaller Dr.Mani Children Heart Foundation, our performance (even if not shining or stellar) is fair. As this “Civil Society” article says,

“Very few of India’s NGOs are very big: there are perhaps just 200 with more than Rs 25 crores (US$5 million) each to spend in a year. Around 70 per cent are the very small organizations, some with as little as Rs 4 or 5 lakhs (US$10,000) in a year. It is these small outfits which reach out to communities, work at the grassroots and represent the true spirit of an active and vibrant voluntary effort.”

Are there problems? Of course. There is corruption and mishandling of funds. Some Indian charities are structured so that they are merely tax saving entities rather than delivering value to their beneficiaries. And overheads can be steep, as the 31% average figure indicates.

But that’s the tiny minority of “rotten apples” you’ll find in just about any barrel you choose to poke around in. As “Civil Society” comments,

“These are valid concerns, but not as widespread as it has become fashionable to imagine. Essentially people who take up causes really care and they are as honest as the system allows them to be.”

And so the battle continues. Evolving and adapting to the uniqueness of India’s non-profit environment is an interesting, sometimes frustrating, and never uneventful experience, one where creativity and innovation are often better and more rewarding weapons against uncertainty than credentialing and striving to comply with norms.

That’s why I try different and unconventional approaches. Like running this special “Business Booster Sale” which promises to give business owners incredible value for making a contribution to charity.

Far better than just going to them, hat in hand, with an appeal seeking a donation, don’t you think? Take a look at this offer (you’ll be blown away by how much value you’ll get) and tell your friends about it too. But hurry – because it ends on December 31st, 2010.

And you can also be in my “Magic Forty”get more details here

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If God Took Human Form…

by Dr.Mani on October 22, 2010

RE-TWEET IT!

I have many heroes in my chosen field of heart surgery. Like Dr.Denton Cooley, Dr.K.M.Cherian, Prof.Marc de Leval and Dr.William Novick. Yesterday, I met another one.

Until I attended his lecture at the 20th World Congress of Cardio Thoracic Surgery, I had never heard of Russell Lee. After it, I won’t forget him!

Quiet, unassuming and brilliantly effective, Russell has spent a lifetime co-ordinating surgical missions to 23 different countries, helping save the lives of little children.

His work started in 1986. Over TWENTY FOUR years, it has touched over 3,000 little lives! And in his presentation, he shared the story of how it all began.

One slide showed a little 5 year old girl in a tiny bathtub. It was Russell’s daughter, now 30 years old. And he told us a story.

On a field trip to Tonga in the 1980s, his team had been evaluating patients with heart disease. The poverty was so severe, none of the hundreds thronging the clinic had a hope of being able to afford treatment in another country. And heart surgery facilities in Tonga were unavailable.

Among the patients, there was one woman who shared the same birthday as Russell’s wife. And she had a daughter who was almost exactly the same age as his. He says: “With a shock, I realized that six months from now, this lady may not be around for her child.

That realization disturbed him. It sparked off a dream and a vision. One that he sustained for 24 years. And helped him reach out to save the lives of thousands of unfortunate kids and young people with heart disease.

Russell spoke of the importance of having a vision and a team. He touched upon passion, patience and persistence as virtues for anyone engaged in such a calling.

The most poignant moment of his brief lecture was when he pointed out that “Unfortunately, we can’t save everyone”. I explored this further with him afterwards, as it’s a tough choice I’m forced to deal with in patient selection, too.

“If one child has to stay in ICU for 3 days, that’s 3 other children who just lost a chance” he explained. It was a powerful paradigm – and one any social worker facing resource constraints will identify with, and appreciate better.

I told him how inspirational I found the figure of 3,000 operations in 24 years – especially as it had taken me nearly 8 years to fund 70 heart operations through my Foundation.

Russell explained how it takes time to build momentum. His first mission performed 5 operations. The latest one did 56 operations over an 8 day period!

I left the auditorium feeling energized and inspired. And on the long drive back home, I couldn’t help but wonder… If God were to take human form, maybe he’d look like Russell Lee. I’m sure his little heart kids would agree!

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In Your Hands

Someone asked me once what it is like to hold the heart of a child in my hand.
“It must be so tiny,” he said. “How can you see to put the stitches in?”
I thought for a moment.
“It is tiny,” I agreed. “It is the size of a hummingbird.”

“And sometimes that is what I think [...]

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Just Imagine

Imagine…
A tiny little two year old girl in my out-patient
clinic. Bright eyes. Long, curving eyebrows. Jet
black, curly hair.
But her breathing is labored. Her chest heaves
and falls with every heart beat.
Her pinched, anxious face is intense with the effort
it takes to suck air into her starving lungs.
I place my stethoscope [...]

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NAMS4Kids Giveaway – In a Nutshell

Maybe you have little time and want to get right to the point. So, here’s an executive summary of the NAMS4Kids event.
What is NAMS4Kids?
At the NAMS Workshop in Atlanta later this month, we plan to raise at least $10,000 to sponsor heart surgery for kids from under-privileged families through the Dr.Mani Children Heart Foundation.
How [...]

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Small Change, BIG Impact

My favorite line in a song goes:
 "We may not change the world in one day
 But we still can change some things today
 In our small way!"
I’ve made it my motto, in a sense.  And keep
trying to make SMALL changes every day – that
sometimes make a BIG impact.
Today, I’m inviting you to join me… in one
small change [...]

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A.R.Rahman and Congenital Heart Defects Awareness

It was around 8:00 p.m. I was working on a blog post, when my wife read about it on a news website.
“A.R.Rahman’s daughter had surgery – for a congenital heart defect.”
The familiar cold feeling gripped my heart. Fifteen years of fighting this deadly scourge hasn’t yet made me immune against it. I [...]

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In The Zone

I just returned from surgery. It was the 61st operation funded by the Dr.Mani Children Heart Foundation. The patient was a 2 year old baby, who weighed just 9 kilos. The surgery lasted 4 hours. Everything else faded into the background.
Two days earlier, I spent all day and night blogging and [...]

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When Technology Meets Spirituality

Bill Gates is on Twitter. I followed him. One of his early tweets linked to “The Gates Notes”. I read some.
And paused, deep in thought.
In my professional life, I’m a technologist and technician. Pediatric heart surgery is among the most technically advanced, evolved and challenging medical specialities.
The Norwood operation for Hypoplastic [...]

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Wanted: Evangelists (Celebrity Optional)

Seth Godin pre-launched his new book, LINCHPIN – in style. In the process he helped raise $100,000 for the ACUMEN fund.
I’m working on my 2010 budget for the Dr.Mani Children Heart Foundation. We are likely to spend $45,000 to sponsor more heart operations (between 80 and 110).
Viewing these two facts together brought something [...]

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