Holiday 2017 Newsletter

Holiday Message from Dr. Salyer

My very warmest wishes to all of you as the holiday season gets underway. And isn’t it hard to believe that 2017 is already coming to a close? If you’re at all like me, you can’t help but marvel at how quickly each new year seems to pass. And I can’t help but marvel, too, at what a momentous year for the WorldCF 2017 has been.

With the extraordinary gift from Mary Louise Miller, widow of our beloved former board member Dr. Dane Miller, which we reported to you a year ago, we have been able to re-double our efforts around the world to give new faces, dignity, and acceptance by their peers and families to many hundreds of children.

 

I remain chairman of the foundation board, and our board of directors is currently comprised of eight women and men who are profoundly committed to the work we do and who each bring particular talents, expertise, and perspectives to their foundation oversight.

 

Five craniofacial surgeons from around the world comprise our medical directors, and they are led—as we announced in our last newsletter—by Dr. Diego Steinberg, who is a former WorldCF fellow and is based in Buenos Aires. As the foundation’s first Medical Administrator, Dr. Steinberg—a very fine surgeon in his own right—is now assumiong some of the medical oversight and management duties I have undertaken over the years. It is our hope that we will raise enough income from wonderfully committed people like you for Dr. Steinberg to become a full-time foundation employee sometime in 2018.

 

Russell Martin, a renowned author and documentary filmmaker—whose 2013 film Beautiful Faces chronicled the career of our greatly missed board member Dr. Fernando Ortiz Monasterio and the extraordinary craniofacial clinic he established in Mexico City—became the WorldCF’s first president at the beginning of 2017. Russell reports that it’s been a year of great challenges and many accomplishments, and that he is more committed than ever to helping ensure that as many children as possible around the world grow up with normal faces with which they can live confidently and proudly. Foundation Coordinator Jan Howes and Patient Coordinator Jasmine Jackson (herself a former foundation patient) work diligently to keep us moving in ever-more-productive directions, and I’m grateful to them for all their help.

It’s also been a special pleasure for me—and for all of us—to have Dr. Akira Yamada, perhaps the world’s foremost ear-reconstruction specialist and a WorldCF medical director, based at the foundation’s Dallas offices while he has prepared for the U.S. exams that will allow him to assume the positions that await him as a staff surgeon at Lurie Children’s Hospital in Chicago and as a professor in the medical school at Northwestern University. All of us at the foundation agree that he is one of the world’s most very special people, and although we are not losing him in any way, we will miss his bright and always supportive presence in Dallas, and we wish him wonderful years ahead in Chicago.

 

I want to take this opportunity, too, to wish all of you the very special joys of the holiday season. May you and your families celebrate in ways that are deeply meaningful, and please remember in this season of giving all the children around the world who depend on you to receive the gift of normal faces so they can fulfill the many promises of their young lives. You’ll read about several of them here, and please remember that for every child we introduce to you, dozens more receive life-changing care from WorldCF-affiliated craniofacial surgeons, clinics, hospitals, and medical personnel here in the U.S. and around the globe.

 

Thank you so much in advance for giving as much as you possibly can to make these children’s dreams become realities! Thank you, and may God bless you.

WorldCF Medical Director Dr. Akira Yamada

Frestha before and after her recent very successful surgery

A Fresh Start for Freshta Following Her Surgery

For most of 2017, we offered you updates about the little Afghani orphan named Freshta who has begun a new life in the United States. Freshta was born in Afghanistan with a large teratoma (a normally benign tumor with tissue or organ components from multiple germ layers), a cleft lip and palate, the absence of her right eye, and a deformed orbit and right side of her face. As is far too common with enormously challenged children like her, she was abandoned just days after her birth by her family outside an orphanage operated by Japanese missionaries in Kabul, the capital of her home country, where her cleft lip and nose were repaired with less than optimal results.

 

Freshta’s Chicago surgery was delayed for several months while Dr. Lisa David and a team near Freshta’s home in North Carolina worked to seal leakage of fluid from her head and to control recurring seizures likely caused by her teratoma. Freshta was healthy enough at last this fall to undergo major surgery—which ultimately took place at Wake Forest Baptist Medical Center in Winston-Salem. Dr. David led the September 29 surgery, where she was assisted by staff colleague and pediatric neurosurgeon Dr. Daniel Couture, and by Dr. Derek Bruce, a world-renowned pediatric neurosurgeon who is currently a WorldCF medical director and member of our board of directors.

 

Drs. David and Bruce report that the surgery to remove Freshta’s huge teratoma was a great success and that, as this newsletter goes to press, she has had no more seizures—something that all of us are delighted to hear. Freshta—who everyone who meets her falls in love with—is now in temporary foster care in the Winston-Salem area, prior to moving to a new and, we hope, permanent home in North Carolina soon.

 

From the outset of her great adventure, Freshta has been assisted by nuns, physicians and surgeons, visa and adoption attorneys, international child-welfare advocates, and by the North Carolina family who cared for her up till the time of her surgery. Yes, it takes a village to raise a child, and without the constant care of dozens of people in Afghanistan and the United States, Freshta would not be getting the fresh start she so richly deserves.

 

Her future is very bright, but her additional surgeries will be complex and expensive, and please help us help this precious little girl live a truly normal life!

New WorldCF Programs Planned for 2018

As part of the WorldCF board of directors’ 2017 commitment to redefine our mission and refocus our efforts to bring excellent care to as many children around the world as possible, the foundation will enter 2018 with three-pronged focus about which we are truly excited.

 

We will expand the Dr. Dane and Mary Louise Miller Visiting Professorship to include new medical administrator Dr. Diego Steinberg and WorldCF medical directors Dr. Derek Bruce, Dr. David Chong, Dr. Arun Gosain, Dr. Akira Yamada, and foundation founder Dr. Kenneth Salyer, each of whom will travel to WorldCF affiliated centers annually to teach, train, and perform surgeries in order to significantly advance the skills of the surgical staff at these centers.

 

With Dr. Salyer’s and Dr. Steinberg’s leadership, we will advance the craniofacial care of our most complex cases by overseeing the coordination of treatment of patients at four WorldCF craniofacial centers spread across the globe; develop a WorldCF Virtual Learning, Planning and Modeling Initiative, utilizing digital modeling, 3D printing, international teleconferencing, and other tools to diagnose and plan surgical treatment for the most complex craniofacial cases worldwide, and create an Internet-based a Rapid-Dissemination Network that will educate medical professionals around the world about craniofacial best practices, diagnoses, treatment protocols, innovative surgical techniques, and much more.

 

And we will implement a robust campaign for foundation sustainability by acquiring, renewing, and stewarding donors who will contribute generously to ensure the long-term financial health and stability of the organization, working with professional consultants to identify the individuals most likely to support our mission and vision, and creating key messages and materials that most effectively convey our mission and inspire generosity from our donors.

 

We have always worked tirelessly to help children in desperate need receive the surgical care—and the normal faces—they deserve so much. With this new strategic plan in place, and with energy and commitment of foundation staff and volunteers, and with the enormously generous support of financial supporters like you, the foundation’s mission is ever-more clear, achievable, and in sight. With your wonderful help, one day every child who longs simply to be normal will be! And we could not do our vitally important work without you!

Consider A Legacy Gift to the WorldCF

We look forward to sharing more information with you soon about a remarkable supporter of the WorldCF who recently informed us that he has decided to make a significant legacy gift to the foundation.

 

A legacy gift is a charitable donation designated through one’s will or living trust that is transferred when one’s estate is settled following death. The gift is exempt from U.S. federal estate taxes and ensures that the entire gift supports the mission of the WorldCF or other foundation.

 

In our recent case, this former foundation patient who is grateful for the care he was offered long ago by Dr. Salyer and his colleagues—and who profoundly believes in the international work of the foundation aimed at bringing normal lives to needy children with very challenging craniofacial abnormalities—is very generously doing what he can to ensure that our work continues far into the future.

 

We are honored, we are deeply grateful, and look forward to sharing more with you soon about this remarkable individual and his determination to help kids everywhere.

We also invite you to carefully consider what will become of your own estate following your death, and whether it might make sense for you to ensure that some or all of it goes toward helping the very neediest children in the world. If you determine that a legacy gift to the WorldCF is right for you, it’s one that will be deeply meaningful to you now and always, and it will offer extraordinary help children yet unborn who would otherwise lead tragically limited lives.

 

We deeply appreciate your support now, and far into the future as well!

Four-year-old orphan Freshta prior to her successful recent surgery in North Carolina

Healing Children’s Faces in 2017

Each year, the WorldCF aids hundreds of children and their families by supporting centers in many parts of the world where they receive life-transforming surgeries, and by assisting families with travel, lodging, and other expenses. Less directly but at least as importantly, our work educating and training new generations of craniofacial surgeons around the globe means that hundreds of surgeons now can perform the incredibly complex head and face surgeries that once only a few surgeons could.

 

Six-year-old Tajikistan patient Maftuma prior to her

successful surgery in Moscow

 

For pioneer craniofacial surgeons like Dr. Salyer, ensuring that a new generation of surgeons is fully equipped with the knowledge and tools they need to provide truly excellent care is every bit as important as offering an individual patient a transformed face and a renewed life. In the pages of this newsletter, we often share with you the stories of a few very special patients with whom we cannot help but fall in love as we work to dramatically improve their lives.

 

But they are only a small fraction of the hundreds of children whose lives we help transform because you care and because you support the work we do. On behalf of these very special patients we’ve introduced to you this year—and the hundreds of other patients who we get to know less well, yet whose lives we touch because of your amazing generosity, we offer our deepest thanks this holiday season, and we ask you to continue to give as generously as you possibly can!

Somto prior to his successful surgery in Cape Town

Chinese orphan Wei Er, prior to her upcoming surgery in Seattle

Please Open Your Hearts and Give Life This Holiday Season

In June of this year, four-year-old Somto traveled with his mother Nancy from their home in Nigeria to Cape Town, South Africa, where WorldCF colleague Dr. Frank Graewe and his team performed lifesaving surgery on the young sufferer of Crouzon’s Syndrome, a genetic disorder that prevents a child’s head from growing normally and often results in bulging eyes and an array of vision problems caused by shallow eye sockets. In Somto’s case, his airway had become severely constricted as well, and he would almost certainly have died without surgery.

But Somto is thriving as 2017 comes to a close. The external distraction device that his parents give a micro-adjustment several times a week is reshaping his skull just as his WorldCF-affiliated medical team anticipated. Somto is well on his way to appearing—and being—utterly normal in every way, and that’s reason to rejoice this holiday season.

 

Yet only days ago, the WorldCF began the often-lengthy process of helping a desperately needy year-and-a-half-year-old Venezuelan boy named Lucas, who was born with a severe facial cleft and a frontal tumor known an encephalocele. Lucas will require complex surgeries in order to live a healthy and normal life, and the process will be long and enormously expensive.

Just as you helped give Somto both life and a meaningful future during this past year, please do everything you can in this beautiful season of giving and caring to ensure that Lucas survives, and that he grows normally and confidently makes the most of his life.

 

Somto and Lucas—a boy whose life you have transformed and one whose life is currently imperiled—are emblematic of the reasons why this work is so vitally important and meaningful to us. Every child deserves the best life he or she can have—and you make possible wonderful lives for these precious children.

 

Thank you for everything you have done this year and in the past. And thank you in advance for helping us make miracles happen in 2018!

Somto days after his 2017surgery

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World Craniofacial Foundation

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Office: +1 972 566 6669

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800 533 3315

info@worldcf.org

www.worldcf.org

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