2013 Brings Research and Treatment Progress for Pediatric Patients
Transcription
2013 Brings Research and Treatment Progress for Pediatric Patients
Chronicle Fall 2013 Enhancing the quality of life for people with special needs caused by rare genetic disorders. 2013 Brings Research and Treatment Progress for Pediatric Patients at Risk for Early Onset Stroke A total of 28 patients from Ohio, Kentucky, Tennessee, and New Jersey have now been confirmed with SAMS Association. SAMS is the acronym of Stenosis, Aneurysm, Moyamoya and Stroke, the most striking characteristics of a cluster of serious cerebrovascular disorders associated with this condition. According to DDC Clinic researchers Drs. Heng Wang and Bao Xin: “The disease was first identified by us in several Amish communities and thought to be rare in the general population, but we have recently confirmed 8 new patients with the disease, including 3 non-Amish patients from New Jersey.” The first patient with this condition was referred to DDC Clinic six years ago. Early signs of the disease include relatively smaller size at birth, low muscle tone and irritability during infancy, along with poor growth and short stature during their childhood. The affected children also have poor blood circulation in their hands and feet, lowpitched hoarse voices, joint problems and abnormal laboratory findings. Radiological images showing clinical manifestations of SAMS The gene mutation causing the disorder was identified by DDC Clinic in 2011 – it was a new condition never before described in medical literature. People with this disorder suffered from cerebral vasculopathy – a disease of the blood vessels in the brain – and were at significant risk for early onset stroke. DDC Clinic then received referrals from physicians of Cincinnati Children’s Hospital for six more children with similar clinical features. Genome-wide genetic mapping studies performed by the DDC Clinic research team suggested that all six children were affected by the same disorder and that a mutation, or variant, in the SAMHD1 gene was responsible for this novel condition. SAMHD1 was originally identified in human > PAGE 2 DDC Clinic Genetics Laboratory Achieves Advanced Certification Since its opening in 2005, our genetics lab has operated as a productive and highly respected research laboratory. Under the research program, DDC Clinic developed more than 40 genetic tests for rare diseases and performed several dozen comprehensive, translational genetic studies to solve medical mysteries that had long challenged families. All families who participated in our many research projects did so at no charge and research findings were communicated with them in a timely manner. Embedding a research laboratory in our medical home is the primary driver that increased our patient diagnosis rates from 20% to more than 70% today. In recent years, we have confronted a significant dilemma. Increasingly, we > PAGE 3 Many Thanks to... DDC clinic is grateful for the support from the following friends, both old and new! Ohio Developmental Disabilities Council Thank you for your collaboration and continuous support of the “Amish Community Project.” We received $20,000 from the Council for the project in 2013 with matching support of $6667 from Holmes County Association for Handicapped Citizens and Holmes County Board of Developmental Disabilities. Shiloh Mennonite Community Benefit Auction On July 13, members of this community in north-central Ohio held an all-day benefit auction to support our work with special children. Proceeds from the event were $32,550. Anonymous A gift of $30,000 with a matching gift from another donor for an additional $30,000 to support our ganglioside GM3 synthase deficiency research project. Parkson Foundation We appreciate your renewed support of our nutrition program with a $5800 donation for project support and donated vitamins and supplements for children, adults and expectant mothers in the local Amish community. Bessie Benner Metzenbaum Fund $10,000 in general operating support. We are grateful for all the work the Bessie Benner Metzenbaum Fund does for the special needs community. United Way Services of Geauga County $1,500 from the Youth Fund Distribution Committee in support of our Patient Assistance Program. We are grateful for our partnership over the years and proud to be a United Way partner agency. Patchwork 2013 Benefit To the many supporters who joined us on May 18th, thank you for a terrific event! Special thanks to the Bessie Benner Metzenbaum Center for hosting this year’s event and to our terrific co-chairs who worked hard to make this year’s benefit a success, Karen Petz, Beth Ballee and Patti Gallagher. Net proceeds were $41,000! Due to the efforts of our donors, guests and friends along with our amazing corporate sponsors, Affymetrix, University Hospitals, Fairmount Minerals, Western Reserve Farm Cooperative, Great Lakes Cheese and Sheoga Hardwood Flooring & Paneling our event was successful. We hope that everyone enjoyed themselves and look forward to seeing you next year! DDC Clinic Craft Club for Community Women Ladies join together once per month for fellowship and to craft various items such as quilts, pillows, wall hangings and dolls. We thank them for the two beautiful quilts auctioned off at Patchwork along with the other craft items donated. Your volunteer efforts and support are appreciated. 2 | DDC Clinic 2013 Brings Research > from page 1 dendritic cells and its roles in immune function and inflammation was further highlighted by this study as patients also showed signs of an immune system disorder. Early diagnosis is critical. Last year a previously healthy teenager with this condition suffered what could have been a fatal stroke; but he recovered fully because the family had been made aware of the disease, educated on the signs of stroke, and knew to seek immediate medical attention. With a growing number of SAMS Association patients and growing research collaborations with Jacek Skowronski and Michael Lederman of Case Western Reserve University and Michael Henrickson of Cincinnati Children’s Hospital, we are making significant research progress in understanding the functions of the SAMHD1 gene. Most recently, we have also made progress in treating patients’ cerebrovascular abnormalities with targeted administration of antiinflammatory agents. There is early evidence that a number of these patients have seen some improvement in brain blood flow, potentially lowering their risk for stroke. Blake Andres, Executive Director of DDC Clinic, notes that the SAMS Association research progress exemplifies the value and effectiveness of embedding a research laboratory in a medical home like DDC Clinic: “Community support of our translational research and personalized medicine has been key to improving understanding of a number of rare diseases and broad-based health concerns. We are privileged to do this work – providing hope for families and potential treatments to improve the quality of life for their children.” Research supported in part by The William Bingham Foundation, The Elisabeth Severance Prentiss Foundation, The Reinberger Foundation and The Leonard Krieger Fund of The Cleveland Foundation. Recent Publications Human Mutation: A homozygous missense mutation in HERC2 associated with global development delay and autism spectrum disorder CNS Neuroscience and Therapeutics: Heterozygote genotypes at rs2222823 and rs2811712 SNP loci are associated with cerebral small vessel disease in Han Chinese population Molecular Syndromology: Identification of Two Novel ERCC6 Mutations in Old Order Amish with Cockayne Syndrome DDC Clinic Genetics > from page 1 receive requests nationally and globally for genetic testing for conditions that DDC Clinic is often the only resource. Until very recently, we had no way to offer our lab services to these clinicians. As a research laboratory, testing results could only be seen as research findings and could not be issued in reports to physicians in other clinics and hospitals. To improve this situation and provide better service to clinicians and families in outside communities, we have reshaped our laboratory. In addition to continuing our efforts conducting cutting-edge genetic research, we transformed part of the laboratory operations to a clinical laboratory setting. We have re-developed our testing assays in compliance with CLIA regulations. CLIA stands for the Clinical Laboratory Improvement Amendments. It requires that all laboratories performing clinical diagnostic tests on human samples be certified by the Center for Medicare and Medicaid Services. The objective of CLIA is to ensure quality laboratory testing through regulation and inspections. We applied for licensure and received a provisional certificate in September 2012, passed the required inspection with zero deficiencies in May 2013, and just this month, after an 18-month effort, received our final certificate of compliance. With CLIA certification, we are not only able to provide outside diagnostic testing services, but we are also eligible to bill insurance for payment. As a continued service to our self-pay families, we will offer our testing at an affordable, discounted rate. This new laboratory certification will significantly grow the impact of our translational research and provide other physicians the tools for timely and accurate diagnoses. DDC Clinic’s Molecular Genetics Laboratory is now one of the few CLIA certified clinical reference laboratories in the nation with a focus on rare genetic disorders. American Journal of Medical Genetics: Cutaneous dyspigmentation in patients with ganglioside GM3 synthase deficiency To view the full manuscripts go to www.ddcclinic.org Congratulations to Dr. Heng Wang Dr. Wang was the recipient of the 2013 “Enlighted Kaleidoscope” Award. This award was presented by the Multiethnic Advocates for Cultural Competence at their 10th Anniversary gala, on April 25, 2013, in Columbus, Ohio. This award recognizes Dr. Wang’s work as a research physician, his discovery of genetic diseases and the development of diagnostic and treatment protocols for many genetic conditions. DDC Clinic wishes to thank the following contributors for their generous support of this project: Lake-Geauga Fund of The Cleveland Foundation The Reinberger Foundation The Fred A. Lennon Charitable Trust ddcclinic.org | 3 Invited Lectures & Presentations National Association of Disability Examiners Conference, Columbus, OH, September 2012 Dr. Wang presented Rare Genetic Disorders and Translational Medicine in the Amish Community. Ohio Fetal Medicine Conference, University Hospitals, Cleveland, OH, November 2012 Dr. Wang presented Early Diagnosis of Rare Genetic Diseases in the Amish Population – How Far Can We Go? 2013 ACMG Annual Clinical Genetics Meeting, Phoenix, AZ, March 2013 Dr. Wang and Dr. Xin presented Ganglioside GM3 Synthase Deficiency Causes Immediate Postnatal Growth and Development Retardations that are not Amended by Breastfeeding. Amish America Conference: Plain Technology in a Cyber World, Elizabethtown College, Elizabethtown, Pennsylvania , June 2013 Patient Assistance Program Saves Local Community $160,000 Many of the children seen at DDC Clinic have multiple, chronic and sometimes life-threatening diseases. Treatment, especially for those children with rare metabolic disorders, often requires multiple medications and specialized nutritional supplies. For low income families without health insurance, the cost of the specialized formulas and medicines to improve the quality of life for their children is prohibitive. Five years ago we piloted a Patient Assistance Program to help meet the growing need of our special needs patient families. DDC Clinic staff research and navigate the various companies that offer free or low-cost supplies, and then negotiate and help enroll eligible patient families in the programs that best match their children’s needs . This program requires some effort, but has had significant and growing impact. The Patient Assistance Program has grown from five to now more than 70 families. In the last 12 months alone, we have saved the local community nearly $160,000. This is but one example of how DDC Clinic leverages the support of our collaborators. Patient Assistance Program Dr. Wang and Blake Andres participated in the following presentations and panel discussions: • Medical Home for Children with Special Needs in the Amish Community – A Model to Follow • Challenges Brought by Modern Technology in Genomic Medicine • Beyond a Community Survey – What Services Are Needed and How Can We Provide Them? Tiantan International Stroke Conference, China, June 2013 Dr. Wang and Dr. Xin presented SAMS (SAMHD1) Association – From Translational Research to Personalized Medicine. Genomic Medicine of the Plain Populations of North America, Franklin Marshall College, Lancaster, PA, July 2013 Dr. Wang presented The Story of the DDC Clinic. 4 | DDC Clinic 70 60 50 40 30 20 10 0 2008 2009 2010 2011 Families Enrolled 2012 Visit Our Family Garden Late last fall, DDC Clinic dedicated a new addition to our facility and grounds. The garden is dedicated to the life and legacy of Stephanie Lukes Stone and we very much appreciate the many hands that came together over the last few years to build it. Tom Stone, President of DDC Clinic board said “We are most privileged to be able to serve the special children and their families through the services provided at DDC Clinic and we envision the Family Garden as a place for respite, relaxation, and contemplation for all.” A small winding sidewalk leads you to the center of the garden where bricks commemorate donors. Benches placed at the center offer a quiet place to reflect and enjoy nature while listening to the gentle sounds of the bubbling fountain. Save the Date: Annual Amish Benefit Auction Come bid on a brand new 2-car, 24’ x 24’ garage built to your specifications on your site. Also available for auction will be quilts, furniture, crafts, flowers, vegetables and a few good horses. Don’t miss the opportunity to taste some homemade pretzels, burgers and fries along with homemade pie and ice cream. Bring the entire family out for an evening of fun and food. This annual event is organized by the local Amish community, led by a few of DDC Clinic’s Amish Board members. All proceeds are donated to DDC Clinic. The event is held at the Middlefield Market Pavilion, 15848 Nauvoo Road, Middlefield, Ohio 44062 and the fun begins at 4:00 pm. Annual Amish Benefit Auction Friday, October 11, 2013 4:00 pm Middlefield Market Pavilion 15848 Nauvoo Road Middlefield, Ohio 44062 ddcclinic.org | 5 Thank You 2012 Donors to our Donor Recognition report from 01/01/2012 to 12/31/2012 SUSTAINER ($25,000 AND UP) The William Bingham Foundation Dept. of Health and Human Services Mr. & Mrs. Chuck Fowler Geauga Community Amish Benefit Auction Lake-Geauga Fund of The Cleveland Foundation The Fred A. Lennon Charitable Trust The Reinberger Foundation Mr. & Mrs. Gordon Safran Shiloh Mennonite Community Benefit Auction United Way Services of Geauga County Ms. Frann R. Zverina PACESETTER ($10,000 – $24,999) The Leonard Krieger Fund of The Cleveland Foundation Ohio Developmental Disabilities Council The Susan & John Turben Foundation HUMANITARIAN ($5,000 – $9,999) Affymetrix Fairmount Minerals Foundation Holmes County Association for Handicapped Citizens Bessie Benner Metzenbaum Fund of The Cleveland Foundation Parkson Foundation, Inc. SAMARITAN ($2,500 – $4,999) Mr. & Mrs. Don Daut Drs. Vichai and Patra Duangjak Key Foundation The Ortino Family Foundation Mr. & Mrs. S. James Schill University Hospitals Rainbow Babies & Children’s Hospital BENEFACTOR ($1,000 – $2,499) Anonymous (2) Mr. Blake Andres Ms. Pam Blossom 6 | DDC Clinic Mr. Douglas Brown Burton Rubber Processing A Hexpol Co. Mr. & Mrs. Ronald Cechner Mr. Donald Cunningham and Ms. Sandra Bean Mr. & Mrs. Nick Frank The Frank Agency, Inc. Geauga Sunshine Shop Ginn Family Fund GoldKey Processing, LTD A Hexpol Co. Honest Scale Recycling Mr. & Mrs. P. Wayne Hosmer Mr. & Mrs. Chuck Kampinski Ms. Stacey Langenderfer Mr. & Mrs. Rod Lovas Marge’s Smoke Shop, LTD Mr. & Mrs. Robert Martens Mr. Jeff Moore Mr. Murlan Murphy Dr. & Mrs. James Oh Mr. & Mrs. Jim Patterson Preston Superstore Ms. Janet Spadora Drs. Robert and Cheryl Stern Mr. Paul Stone Mr. Mark Teague and Ms. Anne Marie Kollander University Hospitals Geauga Medical Center Dr. & Mrs. Heng Wang Western Reserve Farm Cooperative Margaret W. Wong & Assoc. Co., LPA Mr. & Mrs. Timothy Wuliger PATRON ($500 – $999) Advance Payroll Funding, Ltd. Mr. & Mrs. Joseph Beckel Buckley King, LPA Mr. Andy A. Byler, Jr. Carroll Co. Church S.W. District 4 Chagrin Valley Rotary Club Chardon Rotary Club Christ Child Society Cohen Syndrome Association The Ellen & Victor Cohn Foundation Dr. & Mrs. Paul DiCorleto Dr. Anthony DiMarco Mr. & Mrs. Timothy Dunn Mr. William Ginn Mr. & Mrs. Robert Glickman Mr. & Mrs. Bill Heller Ms. Margaret Hoeler Mr. & Mrs. David Hurder Kilgore Church District Kiwanis Club of East Geauga County Ms. Dorothy B. Krause Leikin Motor Companies The Edward A. and Catherine L. Lozick Foundation Ms. Theresa Manley Mr. & Mrs. Dale Marshall Ms. Joanne Moeller Mr. & Mrs. Sean O’Reilly Old Order Amish Church Cherry Valley District Ms. Jody Saks Mr. & Mrs. Ed Seeley Mr. & Mrs. Linton Sharpnack Mr. & Mrs. Robert W. Toth Dr. & Mrs. John A. Tumbush Dr. Susan and Mr. Jack Turben Mr. & Mrs. Thomas Vail Mr. & Mrs. John Virost Mr. & Mrs. Joe Vitale Wacker Construction Mr. & Mrs. Marvin Wolf Dr. & Mrs. Baozhong Xin Mr. & Mrs. Owen Yoder Mrs. Anna L. Zverina FRIEND (UP TO $499) Anonymous A.I.D. Incorporated Mr. Les Adair Akron Children’s Hospital All Seasons Mechanical Mr. & Mrs. Robert Amjad Dr. Natalina Andreani Aquire Fire Protection Arcadia GlassHouse LLC Dr. Nancy Arndt Mr. & Mrs. Ara Bagdasarian The Sherwin-Williams Co. Ms. Molly Balunek Mr. & Mrs. Robert Bard Mr. & Mrs. Dick Bass Dr. Irene Bautista Mr. & Mrs. Larry M. Bell Mr. Michael and Dr. Pauline Benjamin Mr. & Mrs. Mark Biche Mr. & Mrs. Richard Bihary Dr. Dennis Black Dr. & Mrs. John R. Bockoven Dr. H. Constance Bonbrest Mr. & Mrs. Heath Bowers Dr. Gerard Boyle and Mrs. Patricia Agatisa Ms. Jane W. Brace Mr. Scott Brace Ms. Susan Braden Ms. Sherry Breedlove Ms. Alicia Bright Mr. Jay Brock Dr. & Mrs. James Bryant Ms. Catherine Bublavy Mr. Eric Buller Mr. Evan Buller Ms. Gail Bundy Mrs. Kristi S. Burr Mr. & Mrs. Eli Byler, Jr. Mrs. Dan U. Byler Mr. & Mrs. Lester J. Byler Mr. Monroe R. Byler Mr. & Mrs. Rudy S. Byler Mr. & Mrs. P. David Carlson Ms. Renata Carmack Mr. & Mrs. Ed Cherney Mr. Don Clark Ms. Kristen Clark Ms. Lorraine Clemmons Mr. & Mrs. Andy D. Coblentz Mr. & Mrs. Leroy A. Coblentz Ms. Nan Cohen and Mr. Daniel Abrahms Ms. Marina Colton Mrs. Rita Combs Community Care Ambulance Community Church of Chesterland Mr. & Mrs. William E. Conway Mrs. Kathleen Cunningham Ms. Elizabeth Cupp Mr. & Mrs. Martin Davidson Mr. & Mrs. H. Joe Davis Mr. & Mrs. Charles Davtovich Mr. & Mrs. Robert De Bernardo Mr. Kenneth C. Desatnik Mr. & Mrs. Chester L. Detweiler Ms. Fannie Detweiler Ms. Lena M. Detweiler Mr. & Mrs. Wayne M. Detweiler Dr. & Mrs. Morris Dixon, Jr. Mr. & Mrs. Steve Dunmead Ms. Carla Durnbaugh Mr. Nicholas Dybo Eli Miller’s Leather Shop Mr. Russell Ellis Mr. & Mrs. Marty Emerman Mr. L. Robert Englander We are privileged to serve and learn from our special children and their families. Your help plays a big part in our continued ability to make a difference in their lives. Thank you for your partnership! Mr. Paul Etzler Mrs. Emma E. Farmwald Mr. & Mrs. Jon Ferrin Mr. Andrew S. Fisher Mr. & Mrs. Mervin Ray Fisher Mr. & Mrs. Joel N. Fox Frams Corner Church District Mr. & Mrs. Richard Frenchie Ms. Jennifer Frericks The Friends of the Chagrin Valley Hunt Mr. Daniel Galdun Mr. & Mrs. Jack Gallagher Mr. Gary Gardiner GE Foundation Ms. Mary Gelaznik GhostLight Productions Mr. & Mrs. Robert Gillespie Gilmour Academy Ms. Anna Gingerich Mr. & Mrs. Nick Giorgianni Mr. Andor Glattstein Ms. Jane Glickman Mr. David J. Golden Mr. & Mrs. Bernard Goodman Ms. Kathy Goss Mr. & Mrs. Jeff Grabner Ms. Joan Graham Mr. Lawrence P. Greksa Mr. & Mrs. Robert D. Gries Rochelle & Harley Gross Philanthropic Fund Mr. Dennis Gump Drs. Alan Gurd Ms. Monica Hammer Ms. Bonnie Jean Hanna Mr. & Mrs. Walter Harwood HDHA, LLC Mr. Robert C. Hendricks Ms. Christine Henry Mr. & Mrs. Rudolf Hermes Mr. David Hershberger Mr. & Mrs. Glen Ray Hershberger Mr. & Mrs. Matthew G. Hershberger Mr. & Mrs. Robert C. Hershberger Mr. & Mrs. Bonnie Hofstetler Ms. Ruth R. Holm Holmes Stair Parts, Ltd. Ms. Mary Jane Horner Mr. Donald Hunter Mr. & Mrs. Aaron Hurley Ms. Laura Imm The Honorable & Mrs. Fred Inderlied Ms. Patricia Ingram Dr. & Mrs. Terence Isakov Mr. Christiopher Ivary JP Morgan Chase Mr. & Mrs. Don Jacobson Ms. Gay Johnson Mr. & Mrs. David Kahn Mr. William Kahn Br. Ken Kane Mr. & Mrs. Richard Karges Mr. & Mrs. Rob Katz Mr. & Mrs. Robert L. Katz Mr. Joe S. Kauffman Mr. & Mrs. Mark D. Kauffman Ms. Susanna Kawolics Mr. & Mrs. Harry Keagler Mrs. Jake Kempf Mr. & Mrs. Edward A. Kilroy, Jr. Mr. & Mrs. William Kilroy Kings Gym Inc. Kiwanis Club of West Geauga Mr. & Mrs. Al Klauss Mr. & Mrs. Jeffrey S. Klein Mr. Leonard Klein Mr. & Mrs. Scott Klein Mr. & Mrs. Sid Klein Ms. Cynthia G. Koury Ms. Josephine R. Kozak Mr. Andy Krupa Mr. & Mrs. Erwin E. Kuhns Mr. & Mrs. David Kurtz Mr. & Mrs. Marvin Lader Leading Lady Inc. Mr. & Mrs. John D. Leech Mrs. Betty Lemmon Ms. Beth LeStock Mr. & Mrs. Adam Levin Dr. & Mrs. Mark R. Levine Mr. & Mrs. Bo Li Mr. Michael Lieske and Ms. Natalie Reno Mr. Scott Lillback Mr. & Mrs. Joseph Linek Mrs. Sandra M. Lipman Mr. & Mrs. Tom Lodge Ms. Kathleen Lowery Mr. & Mrs. William Lucht, Jr. Dr. & Mrs. Robert Lukes M.A.C. Enterprises Mahlon’s Masonry LLC Mr. & Mrs. Jim Makee Mr. Joseph Manfredi and Ms. Heide Aungst Marous Brothers Construction Marsh Valley Forest Products Mr. & Mrs. Daniel Martin Mr. & Mrs. Marlowe Mast Mr. Melvin J. Mast Ms. Kelann Maus Mr. & Mrs. Charles McBride Mr. & Mrs. Tim McCormack Mr. & Mrs. Greg McGrath Mr. & Mrs. Edward McHenry Ms. Ilene McMullen Mrs. Ada J. Miller Mr. & Mrs. Andy Miller Ms. Anna Miller Ms. Clara L. Miller Mr. Crist Miller Mr. & Mrs. Crist A. Miller Mr. & Mrs. Crist P. Miller Mr. & Mrs. Eli N. Miller Mr. & Mrs. Freeman E. Miller Mr. & Mrs. Ivan L. Miller Mr. Jacob J. Miller Mr. & Mrs. Joe Miller Mr. & Mrs. John Miller Mr. & Mrs. John J.S. Miller Mr. Jonas V. Miller Ms. Katherine Miller Mr. & Mrs. Keith L. Miller Mr. Lee Miller Mr. & Mrs. Lee Miller Mr. & Mrs. Melvin Miller Mr. & Mrs. Mervin Miller Ms. Naomi Miller Mr. & Mrs. Nelson J. Miller Mr. & Mrs. Noah Miller Mr. & Mrs. Noah J. Miller Mr. & Mrs. Raymond J. Miller Mr. Robert H. Miller Mr. Robert J. Miller Mr. & Mrs. Wallace M. Miller Mr. & Mrs. William J. Miller Mr. & Mrs. Malachi A. Mixon, III Mr. & Mrs. David Mohan Ms. Tina Morris Mr. & Mrs. Thomas Moss Ms. Erica Muhleman Mr. & Mrs. Joe Mullet Mr. & Mrs. Jonas Mullet Mr. & Mrs. Mark Murphy Ms. Patricia Nagorski North Middlefield Amish Church Ms. Jennifer Nottingham Mr. & Mrs. Jon Owens The Paisley Palmetto Ms. Fayza Panno Parkman Chamber of Commerce Mr. Jason Pastor Mr. & Mrs. Jim Penko Mr. Robert G. Perry Mr. & Mrs. Craig Petz Pilgrim Christian Church PNC Foundation Mr. & Mrs. Daniel Pollock Mr. & Mrs. Ronald Pollock Mr. & Mrs. Marc Post Ms. Tamara Pritchett Proforma Lamar Mr. Kenneth Przybyla Red Maple Inn Staff Mr. & Mrs. Randy Reed Ms. Susan Rice Mr. & Mrs. Richard M. Robbins Rabbi & Mrs. Dan Roberts Ms. GeGe Roberts Mr. & Mrs. Joseph Rodriguez Mr. & Mrs. Tim Rose Mrs. Ann M. Rothenbuhler Mr. & Mrs. John M. Saada Ms. Lee Safran Mr. & Mrs. Scott Salminen Mr. & Mrs. Steve Schlein Ms. Sharon Schnall Schneider Saddlery Co. Inc. Mr. & Mrs. Harvey Scholnick Ms. Anna P. Schoutko Mr. & Mrs. Lawrence Schreibman Dr. Alan Shein Sheoga Hardwood Flooring & Paneling Inc. Mr. Melvin J. Shetler Shetler Printing & Office Supply Mr. & Mrs. John E. Shrock Mr. & Mrs. Chuck Siracusa Mr. & Mrs. David J. Skrabec Mr. Jonathan Slain Mr. Anthony Slak Mr. Michael Slama Mr. & Mrs. Bryan Smith Solon Manufacturing Co. Mr. Thomas Spann Stanley Industries Mr. & Mrs. Jason Stewart Mr. & Mrs. Mark Stone Mr. & Mrs. Mike Swiger Ms. Lorraine Szabo Dr. John Taylor Ms. Chris Thornton Mr. Keith Tompkins Mr. & Mrs. Warren Toth Mr. & Mrs. Ike Tripp, IV Mr. & Mrs. Eli E.D. Troyer Mr. Roman Troyer, Jr. Dr. Michael Tsuk Ms. Linda Vaccariello Mr. Roger Vaccariello and Ms. Elaine Motylinski Ms. Anna Van-Heeckeren Mr. & Mrs. Joseph Vauter Mr. Thomas R. Vinette Mr. & Mrs. Les Vinney Mrs. Marilyn Vlah Mr. David Wang Mr. & Mrs. Ray Warner Ms. Maria Wayne Mr. & Mrs. Joseph L. Weaver Dr. Kurt Wegner Mr. & Mrs. Andrew Weisel Mr. & Mrs. Levi J. Wengerd West Mespo Church District Ms. Katherine Wiles Ms. Lillian Wilson Mr. & Mrs. Trevor Wilson Dr. & Mrs. Max Wiznitzer Mr. & Mrs. Richard Wogisch Ms. Kathrine Wolf Womens Fellowship Pilgrim Christian Church Ms. Holly Woods Mr. & Mrs. Allen L. Yoder Mr. David Yoder Ms. Marisa F. Zani Ms. Deborah Zeleny Mr. David A. Ziegler ddcclinic.org | 7 14567 Madison Road Middlefield, Ohio 44062 440-632-1668 ddcclinic.org Enhancing the quality of life for people with special needs caused by rare genetic disorders. BOARD OF DIRECTORS DIRECTORS EMERITI Tom Stone, PhD, President Gordon Safran Eli Miller, Vice President Joseph Weaver Joe Vitale, Treasurer Chester Detweiler, Secretary STAFF JR Bockoven, MD Blake Andres, Executive Director Leroy Coblentz Merrie Darrah Don Daut Patra Duangjak, MD Chuck Fowler Raymond J. Miller Robert Yoder Frann R. Zverina PAST PRESIDENT Robert Hershberger Karen Cechner, Lab Technician Patti Gallagher, Business Manager Valerie Sency, RN, Registered Nurse Erica Stewart, Admin. Assistant Heng Wang, MD PhD, CEO/Medical Director Baozhong Xin, PhD, Senior Research Scientist Save the Date: Red Cross Blood Drive The Red Cross is holding a Blood Drive on September 10, 2013 at DDC Clinic from 1:00PM to 6:00PM. You can register at www.redcrossblood.org and search for zip code 44062.