I’m Susie Schaefer, CEO of the world’s largest cleft lip and palate charity. Ask me anything!

With so many charities out there why should I donate to yours? Also just wanted to add that what you do is incredible. Thank you!

Thanks for your kind words, frozzymm!

Smile Train has a unique, sustainable model for surgery that differentiates us from other global health organizations.

Unique from other cleft charities, Smile Train doesn’t focus on flying in US doctors, but instead builds the capacity of local doctors using the "teach a man to fish" approach – allowing the organization to reach children more safely, more quickly and more efficiently.

Cleft is so much more than a cosmetic issue – it’s also a health and survival issue. Cleft affects eating, breathing and speaking, and brings risk of severe malnutrition and even death, especially for children born in the developing world. ​Cleft treatment improves the life of the patient as well as the lives of their families, communities and regions at large. Our cleft patients go on to participate in their societies and economies in ways they otherwise couldn’t, such as attending school, getting a job, volunteering in their community and having a family.

Not intended to be obnoxious, but with the fairly recent uproar about Komen and how it uses it's money, I'm curious:

• what your annual intake is from contributions?

• what percentage of that is spent on direct care and procedures?

• what is your annual salary?

Hi letdogsvote, not obnoxious at all and is a fair question.

83.8 % of our donations go to our programs. Only 1.7% goes to overhead, which is a necessary allotment in order for our operations to run smoothly and that children with clefts get optimal care. In order to help facilitate in-country sustainability for our partners and properly run our expanding operations, we need to have the best and brightest people working for us full time. (We do spend 14.5 % on fundraising, as we have found that investing in fundraising helps raise more money, which can be spent on aiding more children with clefts around the world.)

We aim to be as transparent as possible and include our financials on our website: smiletrain.org/about/financials.html. Our executive salaries are comparable to our peer international health charities of similar size.

What causes someone to be born with a cleft lip?

Hi Frajer, thanks for your question as I am often asked this.

Most experts agree that many factors play a role in cleft, and there is ongoing research to better understand them. Causes may include a genetic predisposition, as well as environmental factors such as drug and alcohol use, smoking, maternal illness, infections, or lack of Vitamin B folic acid. The good news is that cleft is 100% correctable – costing as little as $250 and lasting as short as 45 minutes – and we’re committed to providing cures for the millions who suffer.

I love what you guys have done. Hope the Draw-A-Thon is going well

Other than medical supplies and training material, what are your typical costs?

Hi my_dpp, thanks for the compliment and asking about the Draw-A-Thon. Right now, we are less than $1,500 away from our World Smile Day goal! (Yay!)

To request your drawing and help us reach our goal, please visit: http://www.gofundme.com/willdrawforsmiles.

As I responded to letdogsvote, only 1.7% of our expenses go towards overhead costs and 83% goes directly to our programs. This includes not only funding surgeries, but much needed ancillary care such as speech therapy and orthodontics.

I read about your charity in the latest freakonomics book. Can you explain how you came up with your opt-out approach?

Our opt-out campaign, which was highlighted by the authors of Freakonomics, was a strategic marketing initiative aimed to motivate prospective donors to make a gift to our cause. As part of the campaign, Smile Train would not ask for additional monetary gifts from the donor after a donation was made by mail. We were able to help many children throughout the length of the campaign, but the inability to communicate patient updates and success stories with the donors acquired became too challenging. As a result, in July 2013 we ended the campaign. We’re marking our 15th anniversary and one millionth surgery by undergoing an exciting evolution in our approach to engagement and fundraising. This includes tapping into the vast reach of online and social channels and exploring some new, out-of-the-box outreach tactics, with the goal of reaching audiences more quickly and effectively. Our new approach allows supporters to keep steadily informed of our successes and see how their contributions are changing the lives of real patients and communities everyday.

How can you be sure that the doctors that are taught to perform these surgeries will be equipped to perform them in a daily basis? I worked for a while in Ugandan maternities and many of them didn't even have latex gloves. Congratulations for the work btw. Very inspiring

Hi Jpvicente, this is a great question and it's why so many of our resources go towards training medical professionals. I have personally seen so many places in the developing world where doctors are not trained in cleft repair. We invest in training and education in areas where there is limited local capacity, allowing us to build long-term, sustainable infrastructures for year-round care.

All of our 1,100+ partner hospitals meet the standards set in the Safety and Quality Protocol – developed under guidance from our distinguished Medical Advisory Board.

Smile Train also ensures high-quality treatment and surgical excellence by reviewing patient outcomes on a continual basis, and providing partner surgeons with ongoing training and support.

What's your favorite flavor of ice cream?

I love this question almost as much as I love vanilla ice cream!

That's great what you're doing. Curio, can a person with a cleft lip finance the procedure?

Hi faceoftheinternet!

Smile Train has provided cleft repair surgeries 100% for free to more than one million patients in more than 85 countries. We have never charged our patients anything, and we never will.

If what you're asking is whether someone with a cleft can finance a surgery for another with cleft, then the answer is yes, absolutely. We accept donations from any and all supporters. If you'd like to make a gift please visit smiletrain.org/donate

Thank you for such a wonderful organization. How can a person like myself contribute?

Random5guy, thanks for the compliment and this is my new favorite question!

Of course you can always donate online at smiletrain.org/donate, but there are also many other ways to support Smile Train and what we do.

One simple thing you can do right now is link your Amazon account with AmazonSmile and choose to support Smile Train with your purchases.

Our Smile-Powered Deeds program allows individuals to give back in out-of-the-box ways is by volunteering your time and talents in exchange for a donation to Smile Train. To learn more about this program visit smiletrain.org/powerofasmile/smile-powered-deeds.

And Random5guy, if you're really up for it, you can run a marathon or compete in an IRONMAN with our Smile Train Team EMPOWER. smiletrain.org/athletics

Finally, by spreading the word about Smile Train and participating in this AMA, you are already contributing! Thank you!

Have you come across any taboos that some cultures may have had with Cleft lip surgery or even an anti-surgery stance? How did they react to seeing the changes post-surgery?

Yes, I often come across many taboos and superstitions about cleft when visiting our partner hospitals. Because there is lack of education about cleft in many of the places we work, which usually point to the mother. Some things I often hear are: the mother using a knife during an eclipse, the mother laughing at others with disabilities, the mother was unfaithful, the mother must have done something evil, and the child being conceived during an eclipse.

These taboos lead to children and their families being ostracized by their community.

Though I don't often hear as many taboos regarding surgery, lack of knowledge about cleft overall leads to some fear of surgery. Some people also fear surgery in the developed world. The good news is that the cleft repair surgery is relatively simple and can take as little as 45 minutes.

The transformation is life-changing and seeing the sheer joy on a mother's face after her child's surgery says it all.

Hi Susie! It's Kevin from Smile Train. What are some of the emerging technologies that you foresee Smile Train using in the near future? How do you feel those can further enhance our programs?

Hey Kevin! So happy you are participating!

Our most exciting technology, which we just presented at TEDMED, The Hive, is our Virtual Surgery Simulator. The Simulator is a free, 3D, web-based training tool. It enables us to provide users anywhere in the world with essential information about cleft anatomy and surgical techniques for cleft repair surgeries. It has already been used in more than 80 countries.

Also, our online patient record platform, Smile Train Express, securely hosts the largest collection of cleft patient data in the world. All of the great before and after photos shared with our supporters also come from this database.

As we move forward, we will continue investing in surgical and training innovation so that global partners have access to the latest techniques and information.

Thanks again for the question. Now get back to work! ;)

What problems are caused by the cleft palate and lip besides being a cosmetic issue? Is cleft palate more problematic than the lip?

Hi ataturk1993!

As I responded to frozzymm, cleft is more than a cosmetic issue – it’s also a health and survival issue. Cleft affects eating, breathing and speaking, and brings risk of severe malnutrition and even death, especially for children born in the developing world.

The cleft palate causes most of the speaking issues cleft patients experience and other health issues like eating, chronic ear infections, and other related illnesses. But it important to remember that no matter if a child has an unrepaired cleft lip, palate, or both, they are often socially isolated and do not have the same opportunities as those born without clefts.

The circumstances of every cleft are different, and I am not a medical doctor, but I've been told by some of our partner surgeons that cleft palate surgery may appear more complex, but the recovery is actually easier compared to that of a cleft lip.

How much of your focus is aimed at awareness versus support? Can you quantify that? I learned some interesting facts already from this AMA so clearly there is value in both.

Hi Broketographer, better late than never! Consider this answer my encore :)

Awareness and support are both important ingredients to our success. Driving awareness — both about the problem of cleft and the solutions we provide — feeds support. So, the more you can help us make people aware of cleft and our work to repair it, the more you help support the cause. Thanks so much for your help!

Thanks for your work.

What is the world estimate for cleft lips and palates?

How many organizations are there and approximately how many man hours, that is surgical hours go to repair per year per organization? Would be nice to have have number of surgeons also though less descriptive.

What is the average number of surgical hours required for a cleft lip repair and cleft palate repair?

Hi maximuszen - thanks for the kind words.

As I responded to lovelybone93, it's estimated 170,000+ new babies are born with clefts every year in the developing world. There is also an estimated backlog of millions of children globally who have not yet received care.

The amount of time the surgery can take varies depending on the severity of the cleft. We currently partner with more than 1,100 hospitals and 2,100 medical professionals to help provide quality cleft care to children seven days a week and 365 days a year.

Thanks again for this question. If you have additional questions, I'll check back here, but won't always be active. Here's my Twitter handle where I can also be reached: @SschaeferST

How much of a problem is cleft lip/palate throughout the world? How much stigma surrounds someone with a cleft lip/palate?

Hi lovelybone93 - great question.

Clefts are really a common birth defect. It's estimated that 170,000+ new babies in the developing world are born with clefts each year. Some experts say that the highest incidences are among Asians - approximately 1 in 500 births. Caucasians have an average incidence of 1 in 700 births and people of African descent have the lowest incidence with approximately 1 in 1,200 births.

In the developing world, there is much stigma surrounding people with unrepaired cleft lips and palates. Many children aren't able to go to school and are socially isolated, but it doesn't have to be this way. Cleft surgery and related treatment that our local in-country partners provide helps improve many lives.

Susie, my household has been a regular contributor to Smile Train for a while now, but we are dismayed by all the junk mail we receive from you. The spouse has sent multiple emails trying to get off the mailing list, but to no avail. Just in the last couple of months we've received a calculator (why?) and stickers. And then there are all the other mailings. This is a lot of money being wasted that could go towards surgeries. We aren't going to forget about you guys if we don't get junk mail. We're seriously considering stopping contributions if we keep getting this crap. What can be done to stop the junk mail from you guys? Seriously, it needs to stop.

Btw, we first heard about your organization because of Jimmy Pardo and the Pardcast-a-thon.

Hi floorplanner, thank you for being a regular contributor to Smile Train.

I really appreciate your continued support. Jimmy is a true friend to us, and a great supporter as well. I hope you tune in to this year's Pardcast-a-thon, too.

I also want to apologize for any frustration our mailings have caused you, as that is never our intention. Our number one goal is always to help as many children with clefts as possible.

I will personally make sure you are removed from our mailing list. Please send your contact details to me at: [email protected]

Thank you again for your support!