Project Participants
Members of the Research Team (in alphabetic order)
Andrea Bradley-Ewing, MPA, MA
Emily Farrow, PhD
Mary Anne Hammond, BS
Mark Hoffman, PhD
Angie Knackstedt, BSN, RN-BC
John Lantos, MD
James McClay, MD, MS
Angie Myers, MD, MPH
Ayten Shah, BSN
Kim Smolderen, PhD
Zohreh Talebizadeh, PhD
Members of the Community Advisory Board-CAB (in alphabetic order)
Seth Bittker, BSStakeholder Category: Parent Representative
Short Biography: Seth graduated from the California Institute of Technology with Bachelor of Science in Mathematics. His primary professional background is in Software Management. He has been actively involved in parents’ advocacy groups and recently published an article based on his personal observations of his son’s condition (autism spectrum) and other struggling parents’ experiences. Seth also presented at the International Meeting for Autism Research in Utah on May 2015. He is eager to learn about potential genetic risk factors contributing to his son’s condition, which stimulated Seth to gain personal experience in using existing technology for SNP data analysis. He obtained his own and his family’s DNA readings through a genetic service company-23andMe. He is interested in using genetic data to find treatments or diet options that may help improve his child’s symptoms.
Role in the Project: Seth contributes patient/parent perspectives to the Project, as well as his personal experience in using direct-to-customers genetic services.
Email: sbittker@yahoo.com
Jeff Blackwood, MS
Stakeholder Category: Industry
Representative
Short
Biography: Jeff is the Kansas State
Representative for Autism Society as well as the
Vice President of the Board for Autism Society
of the Heartland. He is the co-founder, CEO and
President of ABPathfinder, developer of a
cloud-based software tool to improve the
efficiency and effectiveness of autism therapy,
which has been named a recipient of Microsoft’s
2015 Health Innovation Awards for enhancing the
quality of patient care through analytics.
ABPathfinder is based in Overland Park, Kansas;
its mission is to help children with ASD live
more social lives. With the consultation of ABA
and behavioral disorders specialists, the
company developed Therapy Support Software and
technology tools to aid autism, PDD, Asperger’s
and speech therapy, which enables educators and
therapists improve a child’s skill acquisition
rate by up to 20% while cutting administrative
time in half. Currently, ABPathfinder is offered
in therapy centers and school districts across
the country, and Jeff’s team is in discussions
with international therapy organizations.
Role in the Project: Jeff
represents industry point of view in this
Project.
Website:
http://pathfinderhi.com/
Email:
jblackwood@abpathfinder.com
Jamie Bolen, RN, BSN
Stakeholder Category: Parent
Representative
Short
Biography: Jamie is the mother of a
congenital heart defect survivor. Her son was
diagnosed in utero with Hypoplastic Left Heart
Syndrome. He has had multiple open-heart
surgeries many complications postoperatively
requiring additional hospital stays, medications
and further invasive procedures. She currently
works as a Registered Nurse at Children’s Mercy
Hospital (CMH). She was a part of the Family
Advisory Board at CMH as a parent coordinator
from 2008 - 2010. From 2007 to present, she has
served as the Public Relations Coordinator for
the Congenital Heart Defect Families
Association, a support group for families of
children born with heart disease. Additionally,
she is on the Board of Directors for Camp
Systole, a medically supervised camp for
children with heart disease. She has also served
as a volunteer and an advocate for the American
Heart Association since 2005.
Role in the Project: Jamie
shares her experience as a parent/caregiver, as
well as her nursing profession perspective. She
also assists with the dissemination of the
results in patient advocacy groups.
Email: jlbolen@cmh.edu
Amy Brower, PhD
Stakeholder Category: Scientist
Short
Biography: Amy works on several
projects at the American College of Medical
Genetics including serving as Project Manager on
the National Coordinating Center’s Long Term
Follow-Up Project and as a Genomic Scientist for
the Newborn Screening Translational Research
Network. She has a background in medical
genetics, genomics and bioinformatics, and used
to be a member of the Human Genome Project team.
Amy is a former member of the Secretary’s
Advisory Committee on Heritable Disorders in
Newborns and Children and a consultant to the
Follow-up and Treatment Subcommittee and a
member of the Health Information Technology
Workgroup.
Role in the Project: Amy
provides consultations as a geneticist and
facilitates dissemination of the Project
results.
Website:
http://www.nbstrn.org/about/contactus
Email: abrower@acmg.net
Mark Bryant, JD
Stakeholder Category: Patient
Representative
Short
Biography: Mark is recognized as one of
the best land use and public law attorneys in
the Kansas City metropolitan area. He is a
former member of the Kansas City Council, Tax
Increment Financing Commission, and Land
Clearance for Redevelopment Authority and
Economic Development Corporation, who helped
reshape our city and its future. He has served
on the executive committee of the Kansas City
Zoo and Former President and Board member of the
Negro Leagues Baseball Museum. He is Of Counsel
at White Goss Bowers March Schulte & Weisenfels.
Mark has been diagnosed with peripheral arterial
disease (PAD) fifteen years ago and underwent
several interventions for his symptoms. He is
involved with Dr. Smolderen’s PCORI project
(PORTRAIT) and has had a great experience
serving as a patient representative on her focus
group.
Role in the Project: Mark
brings patients’ perspective to the Project, as
well as experience working on PCORI studies. He
also assists with dissemination of this study
among other stakeholders and organizations.
Website:
http://whitegoss.com/attorney/mark-bryant/
Email: mbryant@whitegoss.com
Sheryl Chadwick, BS
Stakeholder Category: Parent
Representative
Short
Biography: Sheryl is the mother of a
childhood cancer survivor. Her son was diagnosed
with Acute Lymphoblastic Leukemia at the age of
six. Throughout his treatment, he suffered from
multiple side effects from having a suppressed
immune system. Sheryl is a Family Centered Care
Coordinator at Children’s Mercy Hospital (CMH)
since 2008. She joined the Family Advisory Board
at CMH as a charter member in 2003, and served
as Chairperson of the Board in 2005.
Furthermore, her background as a Financial
Analyst with IBM compliments her role as a
parent on staff by allowing her to critically
review outcomes and data from patient- and
family-centered care initiatives.
Role in the Project: Sheryl
brings a parent/caregiver perspective to the
Project.
Email: sachadwick@cmh.edu
Broderick Crawford, BS
Stakeholder Category: Patient
Advocate, Community Engagement
Short
Biography: Broderick Crawford is a
community volunteer, dedicated to assisting and
improving the lives of those who are less
fortunate. Broderick has over 25 years of
experience in the health care industry.
Broderick currently serves as the Community
Health Director of the NBC Community Development
Corporation in Kansas City, Kansas. This
includes roles as Supervisor, Ancillary Services
for Saint Luke’s Internal Medicine and Clinic
Supervisor for KU Infectious Diseases as well,
as the Clinic Supervisor of The Heart Clinic.
Broderick has been a member of the New Bethel
Church since 1974 serving as a member of the
Board of Directors, Men’s Ministry, and Health &
Wellness Ministry. Broderick serves on numerous
community organizations including: President of
the Missouri Prostate Cancer Coalition, Mid
America Regional Council Community Health Worker
Advisory Committee, Latino Health for All, and
8th St. YMCA and Better Together Board of
Directors.
Role in the Project: Broderick
brings the patient and community perspectives to
the Project. He also facilitates dissemination
of the Project results among African-American
community.
Website:
http://kcur.org/post/kc-checkup-four-questions-broderick-crawford#stream/0
Email:
broderick.crawford@nbccdc.org
Laura Fitzmaurice, MD, FAAP, FACEP
Stakeholder Category: Physician
Short
Biography: Laura has over 25 years of
experience working in healthcare. She is
Professor of Pediatrics and serves as a
Pediatric Emergency Medicine Physician, the
Chief Medical Information Officer, and the
Associate Executive Medical Director for
Children’s Mercy Hospital. She has been involved
nationally in Health Information Technology as a
member of the National Association of Children’s
Hospitals and Related Institutions advisory
committee on meaningful use, as well as
regionally as a member of Lewis and Clark
Information Exchange’s Board of Directors. Laura
is board certified in Pediatrics and Pediatric
Emergency Medicine.
Role in the Project: Laura
brings physicians’ perspective for the Project
and facilitates the dissemination of the Project
results.
Email: lfitzmaurice@cmh.edu
Valerie Hu, PhD
Stakeholder Category:
Scientist, Parent Representative
Short Biography: Valerie is a Professor
of Biochemistry and Molecular Medicine at The
George Washington University School of Medicine
& Health Sciences, and the Chair of the Autism
and Neurodevelopmental Disorders Initiative
Faculty Committee. A mother of a son with autism
spectrum disorders (ASD), Valerie redirected her
research focus towards autism in 2005 and has
since published several papers on the genes and
biological pathways associated with ASD. The
long term goal of her research is on
personalized diagnosis and treatment of ASD,
which she aims to achieve by developing a better
understanding of the underlying biology giving
rise to different manifestations of autism
through the identification of altered genes,
pathways, and gene regulatory mechanisms
specific to the different subtypes of ASD.
Valerie received her Ph.D. in Chemistry from
California Institute of Technology and did her
postdoctoral research in Membrane Biochemistry
and Immunology at UCLA.
Role in the Project: Valerie
shares her professional expertise as a scientist
working on genetics of neurodevelopmental
disorders, as well as parent perspectives.
Website:
http://andinitiative.gwu.edu/valerie-hu
Email: valhu@gwu.edu
Monirul Islam, MD
Stakeholder Category:
Physician, PCORI Awardee
Short
Biography: Monirul is an Associate
Professor of Epidemiology at the University of
Nebraska Medical Center. His research expertise
is in infectious diseases and patient-centered
outcomes in cancers. He has peer-reviewed and
been invited to collaborate on publications and
presentations that have impacted clinical
practice and the development, refinement, and
implementation of policies, procedures, and best
practice guidelines in the fields of
epidemiology, clinical health care, and PCOR. He
is on the Editorial Boards of the Journal of
Immigrant and Minority Health and the Journal of
International Cancer Education. He is the PI of
a PCORI project with focus on cancer.
Role in the Project: Monirul
contributes his expertise with cancer patient
outcomes research, as well as experience in
working with PCORI.
Website:
www.unmc.edu/publichealth/departments/epidemiology/facultyandstaff/monirul-islam.html
Email: kmislam@unmc.edu
Mary Kinart, BS
Stakeholder Category: Parent
Representative
Short
Biography: Mary is the mother of 2
adopted sons. The oldest son (currently 26 years
old) was diagnosed with ADHD, Bipolar Disorder,
Anxiety, Aspergers, Asthma, Allergies,
Disgraphia, and Hidradenitis Suppurativa, and he
is on numerous medications. Mary is his advocate
for health care and daily needs. She and her
husband are his guardians. Mary has attended
numerous conferences on Autism and participated
in Autism support groups. Her son is currently
receiving services at Vocational Rehabilitation,
Rehab Institute, and Diversity Placement
Services. Mary joined Children’s Mercy Hospital
(CMH) Family Advisory Board as a charter member.
She has been employed at CMH since 2008. For the
last five years she has worked in the Physician
Recruitment department as the Physician
Recruiter.
Role in the Project: Mary
brings parent and caregiver perspective to the
Project.
Email: mlkinart@cmh.edu
Paul Law, MD
Stakeholder Category:
Physician, Parent Representative
Short
Biography: Paul earned his medical
degree from Johns Hopkins University (JHU) in
1997, and received a master's of public health
degree from the JHU School of Public Health in
1996. He has extensive experience in the design
and implementation of health research studies in
autism and international health. In 1996, he
began a collaborative project with the Cure
Autism Now Foundation to develop the Internet
System for Assessing Autistic Children (ISAAC),
currently used by projects at the CDC, NIH, and
both domestic and international academic
institutions. He was the Clinical Database
director of the Autism Genetics Resource
Exchange project and the director of the Simons
Simplex Collection @ Interactive Autism Network
project. Paul joined Kennedy Krieger in 2005 to
lead a project to develop the Interactive Autism
Network, a national autism database and to
support other researchers at the institute
through the discipline of health research
informatics. As a consultant to the World Health
Organization, he is working on an initiative to
develop an international online community of
child health researchers in developing
countries. He is a member of the American
Academy of Pediatrics, the American Medical
Informatics Association and Delta Omega, the
Honorary Society in Public Health.
Role in the Project: In
addition to his expertise as a physician, Paul
serves as a Parent Representative. He shares his
experience with building large health research
studies.
Email: pl@sankuru.com
Matthew Mclaughlin, MD, MSB
Stakeholder Category: Physician
Short
Biography: Matthew earned his medical
degree from UMKC in 2009. He is interested in a
career in research in clinical pharmacology and
is receiving formalized training in a clinical
pharmacology fellowship. Matthew has Advanced
Masters degree in Bioinformatics. He is a
manuscript reviewer for 3 separate journals and
abstract review committee for the American
Academy of Physical Medicine and Rehabilitation,
the primary medical society for the specialty of
physical medicine and rehabilitation. Matthew
also participates in the Rehabilitation Medicine
Scientist Training Program.
Role in the Project: Matthew
shares physician/health care provider
perspectives on the project development and
implementation.
Email: mjmclaughlin@cmh.edu
DeeJo Miller, BS
Stakeholder Category: Parent
Representative
Short
Biography: DeeJo is a Family Centered
Care Coordinator at Children’s Mercy Hospital
(CMH). She is the mother of a child who was
diagnosed with cancer when she was 13 years old.
DeeJo has been an advocate for the American
Cancer Society and the Leukemia and Lymphoma
Society for many years. She has been on staff,
representing the voice of parents, at CMH since
2008.
Role in the Project: DeeJo
brings parent and a caregiver perspective to the
Project. She assists with coordinating any
family focus groups that may need to be convened
and the dissemination of the results.
Email: dkmiller@cmh.edu
Ginger Nicol, MD
Stakeholder Category: Physician
Short
Biography: Ginger is an Assistant
Professor of Psychiatry and co-Director,
Outpatient Child and Adolescent Psychiatry
Clinic at the Washington University School of
Medicine in St. Louis. Her research experience
is on evaluating metabolic outcomes in
antipsychotic-treated youth and adults,
identification and prevention of cardiometabolic
risk, as well as testing interventions to
reverse weight gain and adverse metabolic
outcomes in mentally ill population.
Role in the Project: Ginger
provides expertise as a physician.
Website:
http://wuphysicians.wustl.edu/for-patients/find-a-physician/ginger-e-nicol
Email:
nicolg@psychiatry.wustl.edu
Kelly Ranallo, BS
Stakeholder Category: Local
Community Leader, Patient Representative
Short
Biography: Kelly is the Founder and
President of the Turner Syndrome Global Alliance
(TSGA). She has a teenage daughter who was
diagnosed with Turner syndrome in 2008 and was
immediately discouraged by the lack of answers
and resources available in her community. She
joined the Kansas City Chapter of the Turner
Syndrome Society and served as President from
2009-2013. Kelly also joined the (board) at
Children’s Mercy Hospital and set about building
a Turner Syndrome Clinic from within the
hospital. The Great HeighTS Clinic opened in
2010 and has since become a national model for
providing comprehensive services –including
support and education–to girls and families
living with TS. Kelly’s passion is to learn more
about TS through research to ensure that girls
and women with TS have the information, tools,
and support they need to live to their fullest
potential.
Role in the Project: Kelly
contributes to the Project her community
leadership experience and represents patient
perspectives.
Website:
http://tsgalliance.org/about-us/
Email: kranallo@tsgalliance.org
Leon Rozenblit, PhD, JD
Stakeholder Category: Industry
Representative
Short
Biography: Leon has strong background
in statistics and research methods. He has
taught graduate and undergraduate statistics
courses at Yale, and served as a statistical
consultant on a variety of projects. Leon has
worked for the last 15 years delivering
informatics solutions to interdisciplinary
research projects with a strong focus on mental
health and autism. His work grew from building
systems that supported small collaborations to
some of the largest and most ambitious projects
in the domain, like the Simons Simplex
Collection. Leon is President/CEO at Prometheus
Research founded in 1999. Today, Prometheus is
an organization with over 35 employees that
specializes in using information technology to
help researchers make better use of their data.
The company’s primary mission is to accelerate
the quest for knowledge by designing adaptable
informatics systems that promote dynamic
scientific collaborations and by delivering
effective data management services with those
systems. The Prometheus team has successfully
completed over 40 consulting engagements,
extending its user community to over 20 leading
research institutions across North America.
Role in the Project: Leon
represents industry point of view in this
Project.
Website:
www.linkedin.com/in/leonrozenblit
Email:
leon@prometheusresearch.com
John Spertus, MD, MPH, FACC
Stakeholder Category:
Physician, PCORI Awardee
Short
Biography: John is a cardiologist and
the Lauer/Missouri Endowed Chair and Professor
of Medicine at the University of Missouri-Kansas
City, where he serves as Clinical Director of
Outcomes Research at Saint Luke's Mid America
Heart Institute. He has served on numerous
national committees for the American College of
Cardiology, American Heart Association, American
Medical Association, National Quality Forum,
Medicare and United Healthcare. John’s research
activities led to his induction into the
American Society of Clinical Investigation in
2006, his receipt of the AHA Quality of Care and
Outcomes Research Council's Distinguished
Achievement Award, being named by Thompson
Reuters as one of the most influential
scientists in the world in 2014 and being
awarded the AHA QCOR Lifetime Achievement Award
in 2015. He has extended his translational
research to illuminate the prognostic
significance of genetic and other biomarkers on
cardiovascular outcomes. He founded the
Cardiovascular Outcomes Research Consortium and
CV Outcomes, a nonprofit corporation dedicated
to advancing healthcare quality and outcomes
research in cardiovascular disease and Health
Outcomes Sciences, a biotechnology start-up to
support the implementation of evidence-based,
personalized medicine throughout the country.
Role in the Project: In
addition to his outcomes research expertise and
experience working with PCORI, John also assists
with the dissemination of the Project results.
Website:
http://med.umkc.edu/directories/som-faculty/name/john-spertus/
Email: spertusj@umkc.edu
Olivia Veatch, PhD
Stakeholder Category: Scientist
Short
Biography: Olivia is a Neurogeneticist
and Research Instructor in Neurology at
Vanderbilt University. Her areas of research and
expertise are working with electronic medical
record-based systems and in particular the
Vanderbilt databases, BioVU and the Synthetic
Derivative. Olivia has been actively involved
with multiple National and International genome
and phenome consortiums, such as Electronic
Medical Records and Genomics (eMERGE) Network.
Role in the Project: Olivia
provides consultations with respect to her
experience working with data available in the
eMERGE Network. She also assists with the
dissemination of the results of the study among
research communities and consortiums.
Website:
http://medschool.vanderbilt.edu/vgi/person/olivia-veatch-phd
Email:
olivia.j.veatch@vanderbilt.edu
Darcy Weidemann MD, MHS
Stakeholder Category: Physician
Short
Biography: Darcy completed her medical
degree training, pediatric residency, and
pediatric nephrology fellowship at Johns Hopkins
Children’s Center in Baltimore, Maryland. She
also completed a Masters in Health Science with
a concentration in Clinical Epidemiology at the
Johns Hopkins Bloomberg School of Public Health
in 2014. She is currently a pediatric
nephrologist at Children’s Mercy Hospital and
Assistant Professor of Pediatrics at the
University of Missouri-Kansas City. Her research
interests are in preventing or ameliorating the
complications associated with chronic kidney
disease (CKD) and its progression in children,
as well as the use of large healthcare databases
for research purposes. Current projects include
studies of how arsenic levels affect chronic
kidney disease progression in children with CKD,
as well as examination of novel biomarkers to
predict CKD progression.
Role in the Project: Darcy
provides expertise as a physician experienced
with patient outcomes research.
Email: dkweidemann@cmh.edu
Kristen Worden, MS
Stakeholder Category: Patient
Representative
Short
Biography: Kristen is a triple negative
breast cancer survivor and BRCA1 genetic
mutation holder. She had the wonderful
opportunity to have her cancer journey
highlighted in an article in Marie Claire
magazine and participated in a Q&A on a local
radio station and local news show on TV about
her experiences. She has worked in the
pharamaceutical research industry for over 15
years. She works with multiple pharmaceutical
companies to review study protocols, set up
clinical databases to house the study data,
review data for accuracy, and prep the data for
FDA submission. Kristen served in a leadership
role for the Young Survival Coalition (YSC) for
3 years and organized their largest fundraiser
in Living Pink Gala. She has also been an active
volunteer with the Susan G. Komen Organization.
Role in the Project: Kristen
brings the patient perspective to the Project.
Email: wordenkristen@gmail.com