Newsletter of the Foundation for Faces of Children Fall 2005 Vol. 16, No. 3 Giving at the Workplace Now you can support Foundation for Faces of Children through the City of Boston Employees Campaign (COBEC) and the Combined Federal Campaign (CFC). If you are a city or federal employee, please consider contributing to FFC through these year-end charitable gift-giving campaigns. A single contribution or a monthly or bi-monthly payroll deduction can help provide educational information for craniofacial patients and their families. COBEC is a workplacegiving program for employees of the City of Boston. Use FFC’s identification number 2530 to designate your gift. Federal employees, including those serving in the armed forces, can participate in the Eastern Massachusetts Combined Federal Campaign. FFC’s designation number for that campaign is 5037. Look for more information in the COBEC and CFC materials distributed to employees or contact your Human Resources department. A Successful Walkathon third time). In addition, Dunkin Despite cool, damp weather, FFC’s Ninth Annual Donuts provided coffee and “Miles for Smiles” Walkathon on Sunday, October donuts before the walk, and an 23, had the biggest turnout ever. anonymous donor generously More than 100 family memsupplied a full lunch by Blue bers and supporters walked Ribbon Barbecue of Arlington the three miles around Lake afterwards. Joe Carroll of our Quannapowitt in Wakefield, Advisory Board contributed Mass., to raise funds for the beverages as well as commemFoundation’s educational efforts. orative T-shirts. Parents, siblings, grandparents, Other event donors aunts, uncles, and cousins joined included Festive Occasions in the hour-long walk around the nt iet mome u q a & Carol’s Cloth of Woburn, lake.The walk gave families an y jo ers en aniel Rog D d n a r" u Mass., which, for the third year, opportunity to meet other families "Arth alk. made tables and chairs available at no who have shared similar experiences. after the w charge, and Handy House, which again proAnd the children were excited to vided discounted portable toilets. Sean Kane meet “Arthur,” the character from the book of Party Tent Rentals “gave us a great price” and TV series of the same name, and “Leona on the large tent, notes Woodman, while ADJ the Lion” from the show Between the Lions. Visual Communications produced signs for Both appeared courtesy of WGBH Boston. the event at a reduced cost. In addition, the Help from Our Friends First Parish Church of Wakefield kindly stored “Once again we had some amazing support from tables and chairs overnight, and allowed us to use the area businesses and the town of Wakefield,” says Paula church hall for our post-walk luncheon. Woodman, coordinator of the walkathon.“Many have Special thanks to all our walkers, volunteers, and been loyal to us for several years.” sponsors for making the 2005 walkathon a success. The major sponsors of the event were Wal-Mart Participants collected a total of $13,000. (for the second time) and Edy’s Ice Cream (for the How to Create a Record Keeper Craniofacial conditions often require complicated care, involving many specialists and extensive record keeping. Creating a personal medical record can ensure that the information you need is right at your fingertips. Organizing everything in one notebook or binder can help you keep better track of appointments, phone numbers, medical notes, and insurance information. Your own record keeper is not a substitute for your doctors’ records, but it can provide an overview of your child’s (or your) medical history. Keeping these records can encourage collaborative relationships with doctors and may even increase your understanding of your medical care. In addition, having easily accessible records may reduce the chance of medical errors and avoid duplication in diagnostic testing. A listing of the names, addresses, and phone/fax numbers of your primary care physician, craniofacial surgeon, dentist, eye doctor, otolaryngologist, and other care providers is also important to include, says Elizabeth Leonard, coordinator of the Craniofacial continued on page 2 Creating a Record Keeper continued from page 1 Centre at Children’s Hospital, Boston.This is a valuable reference not only for you but also for the rest of your health care team.To make a medical record keeper, all you need is a three-ring binder, dividers with colored, writeon tabs, and some loose-leaf paper. You may also want a three-hole punch, so that you can add copies of reports directly into the binder. Categories you may wish to file information under include: v Medical insurance information (including subscriber name and group number) v Invoices and explanation of benefits forms v Appointment calendar If the record keeper is for your child, you might also want to include school report cards or progress reports.A drawing by your child or a photo of him or her participating in a sport can also highlight his or her achievements. If you prefer electronic computer files, let websites such as WebMD.com and iHealthRecord.com help you manage your medical information. Using these websites, you can gather and store information on your home computer and then share it with participating doctors. If you already have a medical record keeper and would like to share your organizational tips, please e-mail us at [email protected]. v Medical history (including the initial evaluation and a list of all surgical procedures) v Doctors’ notes (letters or reports from your care providers) v Test results v X rays (if digital and available on easy-to-carry CDs) v Questions for doctors v Directory of care providers Miles for Smiles The Malayandy family and Dotty MacDonald, RN, are all smiles at the barbecue. Dr. John Mulliken and Zack Giordano take a welldeserved break after trekking around the lake. 2 Everyone loves Dotty MacDonald, RN, including Fiona Shine-Duncan (left) and Grace Foley. A New Fellow Albert K. Oh, MD, is this year’s craniofacial surgery fellow at Children’s Hospital Boston. A native of California, Dr. Oh completed residencies in general surgery and plastic surgery at the University of California, Davis, in Sacramento. He received his medical degree from Loma Linda University School of Medicine, where he was awarded the David B. Hinshaw, MD, Award for Outstanding Academic Achievement and Clinical Performance in Surgery. A man of many talents, Dr. Oh majored in Fine Arts – Painting and Sculpture as an undergraduate at Pacific Union College.While in college, he was the assistant director of the Rasmunssen Art Gallery and concertmaster of the Pacific Union College Orchestra. He has won numerous awards at local, state, and national levels for piano and violin performance. In addition, he is proficient in Korean, French, and Spanish. At Children’s Hospital, Dr. Oh is conducting research on the use of 3-D computer technology in the evaluation of facial asymmetry in children born with craniosynostosis and cleft lip/palate. He is also studying the effects of steroids on facial swelling in children who undergo surgery for craniosynostosis. Dr. Oh is married and has two young children. Although his work at Children’s Hospital keeps him very busy, in his spare time, he enjoys sports such as golf, tennis, and basketball as well as reading and playing music with his wife, who is also a musician. Competing for a Cause Ziv Peled, MD, chief resident in the Harvard Integrated Program in Plastic Surgery, competed on behalf of FFC in the June 2005 Honu Half Ironman Triathlon in Hawaii. During the arduous race, he swam 1.2 miles in the ocean, biked 56 miles over hilly terrain, and ran 13.1 miles in 100° heat. A seasoned triathlete, Peled finished in about five and a half hours. In October, he presented FFC co-president Jane McDaid with pledge checks from more than 30 sponsors. Photographs by Joan Seidel Dr. Stephen Shusterman (left) and Dr. Richard Bruun pose with Arthur during the post-walk barbecue. Left to right, walk coordinator Paula Woodman and copresidents Johanna Smith and Jane McDaid are thrilled with the walk's success despite the weather. 3 Saving Faces “Saving Faces,” a remarkable art exhibit about reconstructive surgery, is on display through December 18 at the John Slade Ely House in New Haven, Connecticut.The exhibition, presented in conjunction with the Yale School of Medicine, contains portraits of 17 patients painted by Glasgow artist Mark Gilbert in collaboration with a leading British surgeon, Ian Hutchinson. Gilbert captured patients’ faces before and after surgery for cancer, anomalies, and severe facial injuries at the Oral and Maxillofacial Surgery Units at St. Bartholomew’s and the Royal London Hospital. In addition to altered facial features, the paintings reveal changing emotions and self-confidence. Along with the exhibit, the Yale Program for Humanities in Medicine is also presenting a lecture series.The lectures will examine psychological, emotional, and artistic aspects of the portraits. For more information, go to www.elyhouse.org and click on “Exhibitions and Events.” ® The Foundation for Faces of Children is dedicated to improving the lives of children with craniofacial conditions, including cleft lip, cleft palate, and other head and facial differences.We concentrate our efforts on education, training, family support systems, and the dissemination of accurate and timely information.We also fund targeted research about the causes, treatments, and outcomes of these congenital conditions.The goals and strategies of the Foundation for Faces of Children are to… • Provide leadership and advocacy through research and education. Distribute accurate and timely information as quickly and widely as possible to children, families, medical professionals, and the community at large. • Endorse the team approach to treatment of craniofacial conditions; we believe that the best outcomes result from collaborative treatment by an experienced group of specialists. • Partner with organizations that have similar goals and values. • We are a 501(c)3 not-for-profit organization supported entirely by private donations, grants, and fund-raising initiatives.We receive no government funding. If you are interested in having a board member speak to your group about our organization, or if you wish to participate in or sponsor a fundraising event, please write to Foundation for Faces of Children, 258 Harvard Street, #367, Brookline, MA 02446 or call us at 617-355-8299. 617-355-8299 | www.facesofchildren.org E-mail: [email protected] Anne-Marie Gagnon, Editor Cindy Shields, Designer Nancy Knoblock Hunton,Writer Facing the Future Editorial Staff Board of Directors Jane C. McDaid, Co-President Johanna (Joey) Smith, Esq., Co-President William L. Pratt, CPA, Treasurer Alfred C. Frawley, Esq., Clerk Anne-Marie Gagnon, MSW Mary Lania, RN John B. Mulliken, MD 258 Harvard Street, #367 Brookline, MA 02446 Advisory Board Joe Carroll Patricia Connery Kristin DeKuiper, Esq. Ellen Kelly Dorothy M. MacDonald, RN, BSN Sheryl Rosner, Esq. Beth Tomasello, Esq. Paula Woodman Boston, MA Per mit No. 54528 PAID Non-Profit Organization U.S. Postage