Fall 2018 Newsletter
Autumn Message from Dr. Salyer
The season for acknowledging our manifold blessings is already here. And all of you who support the vitally important work we do at the WorldCF are true blessings to us. You know deep in your hearts that helping kids does something special for each of us as well, and please join me in feeling both proactive and proud when you give generously to the WorldCF.
In this Fall 2018 issue of Transforming Lives, you will read about little Ezekiel from Sudan, his highly complex and very successful surgery in China, and a special birthday party!
We also profile our wise and stalwart board member Sandy Macnab, who is a professional nonprofit consultant based in Chicago, and who-among many dozens of options-chooses to serve the WorldCF simply because he believes in us and the work we do, challenging and skill-demanding work focusing on deformities in infants and children who have no other option.
The foundation is growing exponentially near the end of 2018, and we highlight patients from several nations who have just had surgery or who will have surgery soon. These are wonderful kids who would otherwise be forgotten without your generous support, and we thank you enormously on their behalves.
The work of our foundation is focused on helping children with the most complex congenital malformations of the head, brain, and face. Corrective surgery requires dedicated teams experienced in the extraordinary advancements in technical skills that are required to produce safe outcomes. These abnormalities occur in one in five hundred births in the U.S. as well as rest of the world, and we continue to offer superb care to our own children in the U.S. as well as our international patients.
Watching these children grow up to become productive, compassionate, sensitive human beings who now help others-as Jack Accola and Lacie Carpenter, whom you'll read about in this issue, do-is enormously gratifying to me. And the before-and after-photograph of a younger Jack you'll see is a reminder of what we regularly achieve.
As the holiday season gets underway, please remember all the inspiring children around the world who depend on you for the gift of a normal face-one that will help them fulfill the many promises of their young lives. Remember, too, that for every child we introduce to you, dozens more receive life-changing care from highly skilled WorldCF-affiliated craniofacial surgeons, clinics, hospitals, universities, 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,
Ezekiel and His Parents at The Party
Ezekiel At His First Birthday Party Following His Surgery
Young Ezekiel, From Sudan, Gets a Fresh Start in China
Our wonderful little Philippine patient Stephie, who suffers from Apert’s syndrome, underwent surgery in Manila in June. Her parents shared Stephie’s pre-surgery prayer with us. “Dear God, please be with me on my surgery day. I pray for a safe and successful operation. Help me to be strong so I can recover well. Amen.”
Born in June 2017, Stephie suffers from a rare craniofacial disorder that results in premature fusion of the skull bones, leading to abnormal head growth, a sunken appearance in the middle of the face, bulging and wide-set eyes, a beaked nose, and an underdeveloped upper jaw with crowded teeth and other dental problems. Shallow eye sockets also cause vision problems, and early fusion of the skull bones can affect the development of the brain if surgical treatment is not received early enough. Many of these children have cognitive delay as part of the syndrome, but there is some evidence that early surgery improves mental function. Most children with Apert’s syndrome also have webbed or fused fingers and toes of varying severity—and Stephie does as well.
Stephie’s first major surgery was performed by Dr. Bernard Tansipek, the chief surgeon at the Noordhoff Craniofacial Center at Philippine General Hospital in Manila. Dr. Tansipek was trained in Taipei, Taiwan under Dr. Yu Ray Chen and Dr. Sam Noordhoff, who established the excellent Manila craniofacial center named in his honor with WorldCF and Smile Train support. Stephie’s first skull surgery went remarkably well, and she will return in the coming months for additional surgeries to repair her cleft palate and separate
her fused fingers and toes. Her parents report that she’s a remarkably happy child— as her photos attest—and we have been honored to help her get the special start in life she needed. Stephie’s prayer has been answered with her first surgery. Please help us continue to answer her prayers and the prayers of other children and parents around the world! Half the children of the world do not receive treatment of any kind for these malformations. Everyone’s help is needed—yours most of al —and thank you so much for your continuing generous support!
Chinese TV Captures Craniofacial Surgeon Dr. Haisong Xu Discussing Ezekiel's Upcoming Surgery with His Father
Board Member Sandy Macnab
A Nationally Recognized Nonprofit Consultant, Has Been Committed to the WorldCF For Many Years
Many nonprofit organizations struggle to get even a fraction of the expert advice those of us at the WorldCF receive virtually weekly from board member Alexander "Sandy" Macnab, who is president of Alexander Macnab & Co., the Chicago-based fundraising consulting company he founded in 1994. The creator of nationally recognized annual and planned giving programs, Sandy has conducted feasibility studies, counseled capital campaigns, and provided planned and major gift support to clients throughout North America. He is also a frequent motivational speaker and workshop presenter on fundraising topics.
In addition to the WorldCF, Sandy also serves on the board of the Take Heart Association Project, is a former president of the Evanston, Illinois United Way, and a past bequest and legacies chair of the North Shore Unit of the American Cancer Society. He is currently an adjunct professor in the Graduate School of Business and Nonprofit Management at North Park University, where he teaches graduate and undergraduate courses on marketing, annual and major giving, and planned giving for nonprofit organizations.
Sandy first consulted for the WorldCF many years ago, then became a member of the board of directors in 2010. "Children who are born with disfigured faces deserve prompt intervention so that they can lead happy, healthy, productive lives," Sandy comments. As board members, "we support a growing team of teaching surgeons who are demonstrating how to solve some of the world's most complex craniofacial challenges. I'm proud to be part of a group of people who support the work of Dr. Ken Salyer, Dr. Derek Bruce, Dr. Akira Yamada, and other renowned specialists because they never lose sight of the humanity and vulnerability of the children they are helping. They never refer to them as 'cases,' but call them by name and share in the joys of their recovery."
Sandy helps us do an ever-better job raising the funds that make our vital work possible and ensuring that we wisely use those funds and become the best foundation we can be. And we know you share our appreciation for his selfless dedication to our cause.
WorldCF Board Member Sandy Macnab
Gabisile and So Many Children Need Surgery
As you read this newsletter in the days before and after Thanksgiving, we ask you to reflect not only on your many blessings but also on the huge challenges faced by some of the world's most needy children. Right now, eight-year-old Gabisile, from Zimbabwe, is in Cape Town, South Africa, where she will undergo life-saving surgery to correct the complexities and health-crises caused by Crouzon's syndrome and to ensure that she does not lose her eyesight.
Seven-year-old Omar, from Nicaragua and who has Goldenhar's syndrome, had the first of what will ultimately be many surgeries in October. We are hopeful that one-year-old Jamoud, from Tanzania, will be able to travel to St. Joseph's Medical Center in Paterson, New Jersey quite soon. He suffers from Crouzon's as well and our superb WorldCF colleague Dr. Silvio Podda is eager to give him the care he needs. Infant Joaquin, from Colombia, is also a Crouzon's patient. He had neurosurgery in April and will have craniofacial surgery soon at the WorldCF's new center at San José Children's University Hospital in Bogatá, a remarkable teaching clinic led by Dr. Rolanda Prada that will care for many patients from Central and South America in the years to come-and a center we will tell you much more about in our holiday newsletter.
The surgeries these kids require are enormously complex and can only be performed by intensively trained and very highly skilled surgeons. At the WorldCF, we devote our ourselves to the rigorous training of young surgeons that makes these kinds of treatment possible-and hugely successful-and no other foundation in the world dedicates itself to providing free care to children whose head and face challenges are truly severe. In many cases, we literally keep kids alive. And almost always, we offer them transformed faces, and renewed lives-just as we were able to give to our American patient and WorldCF supporter Jack Accola, whose before and after photos demonstrate his pride and confidence in his new face.
Please give as generously as you possibly can to help these children and dozens more kids around the world whom we are caring for now. We are profoundly grateful for your financial help. These kids depend on you, as we do, and as always we send our thanks and very best wishes.
Jack Accola, Before and After Surgery
Renowned country and gospel performer Jimmy Fortune, Concert Producer & Former WorldCF Patient Jack Accola & WorldCF Ambassador & Champion Fiddler Lacie Carpenter
Jimmy Fortune and Lacie Carpenter WorldCF Benefit Concert A Great Success
For the third year in a row in September, renowned country and gospel performer Jimmy Fortune headlined a WorldCF benefit concert, produced by former WorldCF patient and dedicated donor Jack Accola-one that also featured the music of fiddle champion and rising Nashville star Lacie Carpenter, a former WorldCF patient and current foundation ambassador. The 2018 concert took place for the first time at the Ho-Chunk Gaming Wisconsin Dells casino in Baraboo, Wisconsin.
Recently, Lacie honored Dr. Salyer and the work of the foundation he initiated almost three decades ago by composing the song "Back Together," which she dedicated to him and performs almost every time she steps on stage.
Oh, the world may bring you down / Turn you all around / Break your heart / Tear you apart / But I'll put you back together
Like a mirror shattered / Broken and battered / If imperfection / Scars your reflection / I'll put you back together
We are grateful to Jack, Lacie, Jimmy and the Wisconsin audiences that now return year after year, enjoying wonderful old-time gospel and country music and contributing to our vital cause. We are deeply grateful to them-and to all of you who support our tireless work giving needy kids around the world the kinds of faces that will allow them to lead good lives. Thank you!