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
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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.