WHO WE ARE
SCIENTIFIC ADVISORY BOARD
Seng H. Cheng, PhD
Seng H. Cheng, PhD, is Senior Vice President, Research and Product Development at Alexion, AstraZeneca RareDisease. Dr. Cheng obtained his BSc and PhD in Biochemistry at the University of London and trained as a postdoctoral fellow at the National Institute of Medical Research, U.K., in the field of tumor biology. He was Group Vice President of Genetic Diseases Science at Genzyme for 25 years researching solutions for patients with rare diseases, notably lysosomal storage disorders and cystic fibrosis. Prior to Joining Pfizer, he was the Global Head of Research of Rare Diseases at Sanofi where he led the pursuit of transformational therapies for patients with rare metabolic, neurological, neuromuscular, renal, pulmonary and hematological diseases. Dr. Cheng is experienced in bringing research programs from discovery through to early clinical development. He has co-authored 278 research articles and reviews and is a named co-inventor on 58 issued US patents in the area of biotechnology. As Chief Scientific Officer at Pfizer, he is charged with building upon the foundation of rare disease programs that are resident in the Rare Disease Category, with emphasis on gene therapy as an emerging therapeutic paradigm.
Dr. Jill Weimer
Dr. Jill Weimer is a developmental neuroscientist and oversees the management and continued development of the translational arm of Sanford Research in Sioux Falls, South Dakota. She started at Sanford Research in 2009, and her research program focuses on the molecular mechanisms mediating development of the cerebral cortex and how disruption in these processes can lead to a whole host of neural pediatric disorders, including Batten’s disease and Neurofibromatosis Type 1. Work in Dr. Weimer’s lab help lead to the first ever gene therapy trial programs for CLN3 and CLN6 – Batten disease. In June 2019, Dr. Weimer joined the Amicus Therapeutics team as the Senior Vice President of Discovery Research and Gene Therapy Science. She plays a unique dual role holding leadership positions with both Sanford Research and Amicus, in addition to leading her research lab. Dr. Weimer grew up in north central Missouri and moved to upstate New York where she received her bachelor’s degree and Ph.D. in neuroscience from the University of Rochester. She completed her postdoctoral training in the Neuroscience Research Center at the University of North Carolina in Chapel Hill with a focus on developmental neuroscience.
Dr. Sami Barmada
Dr. Barmada received his Ph.D. in the Medical Scientist Training Program at Washington University in St. Louis, where he investigated prion diseases with Dr. David Harris, now chair of Biochemistry at Boston University. His neurology residency,at the University of California, San Francisco (UCSF), gave him the opportunity to train with some of the premier clinicians and scientists in neurodegenerative diseases,including Dr. Bruce Miller, head of the UCSF Memory and Aging Center, and Dr. Cathy Lomen-Hoerth, Director of the UCSF ALS Center. During residency and continuing in a postdoctoral fellowship, he worked with Dr. Steve Finkbeiner at the Gladstone Institutes
in San Francisco, where he established faithful model systems for the study of ALS and FTD pathogenesis, including one of the first human neuronal models of familial ALS and FTD. Dr. Barmada arrived at the University of Michigan as an Assistant Professor of Neurology in 2013, and was promoted to Associate Professor in 2020. Dr. Barmada’s research takes advantage of a broad toolkit of innovative technologies and methods involving fluorescence microscopy, computer science and engineering, bioinformatics, genome engineering
and molecular biology to investigate important yet unanswered questions in neurodegenerative diseases. His work, centering on critical abnormalities in RNA and protein metabolism in ALS and FTD, combines basic biology with translational research and technology development. Dr. Barmada serves on the executive advisory board of the Robert Packard Center for ALS Research, and acts on the scientific advisory boards of the Live Like Lou Foundation and Synapticure, Inc. He has taken an active role in their efforts to raise
awareness of ALS in the community, and participates in several local and national fundraising efforts. In recognition of the impact and promise of his original research, Dr. Barmada was awarded the Young Physician Scientist Award from the American Society for Clinical Investigation in 2014, and he received the distinguished Angela Dobson and Lyndon Welch Research Professorship at the University of Michigan in 2015.
Dr. Jason Chua
Jason Chua, MD, PhD is an assistant professor in the Division of Movement Disorders and Department of Neurology at Johns Hopkins University. He completed his MD and PhD at the University of Michigan Medical School, followed by residency training in neurology, clinical fellowship training in movement disorders, and a NINDS R25 research fellowship at the University of Michigan under the mentorship of Dr. Sami Barmada. His current research is focused on cell type-specific regulators of the autophagy pathway. His long-term goal is to identify molecular targets for correcting the defects in autophagy found in neurodegenerative diseases, thereby informing novel therapeutic strategies for these devastating and incurable disorders.
Dr. Laura Adang
Dr. Laura Adang is an Assistant Professor of Child Neurology at the Children's Hospital of Philadelphia specializing in the care of children with leukodystrophies. Dr. Adang is a magna cum laude graduate of the University of Georgia's Foundation Fellowship scholarship program and a graduate of the Medical Scientist Training Program at the University of Virginia, where she received both her M.D. and Ph.D. Her graduate work in the laboratory of Dean H. Kedes M.D. Ph.D. characterized the immune evasion mechanisms of herpesvirus infections. Her work has been published in Cell, Journal of Clinical Investigations, and Journal of Virology, among others.
After graduating from the University of Virginia, she completed her pediatrics and child neurology residencies at the Children's Hospital of Philadelphia and the University of Pennsylvania. During her training, her research explored the seasonal trends of NMDA receptor encephalitis in children. She has completed additional fellowship training in multiple sclerosis and leukodystrophies as well. Her primary clinical focus is the care of children with white matter disorders and neuroinflammatory conditions. She is an active member of the Child Neurology Society.
Dr. Ravi Jagasia
Ravi Jagasia, PhD, is a Neuroscientist, lab head and CNS drug discovery project leader in Neuroscience and Rare Disease Discovery in Roche Pharma and Early Development (https://baselstemcells.ch/en/research/research-groups/jagasia/). Dr. Jagasia holds a PhD from the Max-Planck Institute für Neurobiologie and LMU München, and Master ’s and Bachelor’s of Science from the University of Toronto Department of Physiology. His lab focuses on modelling neuronal development disorders, lysosomal storage disorders, Alzheimer’s and Parkinson’s using pluripotent stem cell derived neurons. Projects started in his lab in both rare diseases such as Angelman’s Syndrome or in Alzheimer are now in clinical trials.
BOARD MEMBERS
Kelly Kozole
Kelly Kozole, now in her 19th year with the Lions organization, has been Senior Vice President of Business Development since 2016. She oversees events, ticketing, marketing, corporate partnerships, in game entertainment,
business analytics, community relations, football education, new media, retail merchandising divisions of the Lions organization. Kozole also manages the relationship with the team's official food and beverage partner, Levy Restaurants, and is an officer for Detroit Lions Charities.
In her most important role, Kelly is a mom to Morgan and Connor Kozole and wife to Kevin Kozole. Upon hearing the diagnosis of BPAN for Morgan in 2019, Kelly formed a plan on how to raise awareness and funding for BPAN. The launch of Don’t Forget Morgan, an idea she is excited to launch on February 29th, 2020, Rare Disease Day.
The task ahead of curing BPAN is daunting, but when she feels overwhelmed she looks down at a bracelet on her right arm that says BELIEVE. Believe, and we will find a cure.
Rod Wood
Rod Wood is the Detroit Lions Team President and CEO, reports directly to Mrs. Sheila Ford Hamp and oversees the business operations of the organization.
In his five years, Wood has implemented significant changes that range from day-to-day operations to new branding and has done so guided by a mission to improve the team's competitive financial position, fan engagement and overall customer experience. Wood has strengthened the Lions and Ford Field brands with improved business partnerships and more strategic alliances that positively influence business initiatives and provide necessary financial support to the club's football operations.
Additionally, Wood works alongside the team's football infrastructure at the Lions' Allen Park practice facility. Over the past three years, they have completely renovated and updated the weight room and practice fields, along with other ongoing facility improvements.
At the League level, Wood was appointed to and serves on the NFL's Investment Committee. For the eight years prior to his appointment as team president, Wood worked closely with the Detroit Lions organization and the Ford Family in his role as President and CEO of Ford Estates.
Over the years, Wood has been a member on numerous company and non-profit boards. He now serves on the board of trustees and is an officer for Detroit Lions Charities. He is also a member of the boards for CATCH, an organization dedicated to improving the quality of life for pediatric patients and their families at Children's Hospital of Michigan and Henry Ford Hospital; the Downtown Detroit Partnership, which includes business, philanthropic and government partners that strengthen the city through strategic initiatives and programming; and newly-created Detroit Sports Organizing Corporation, geared specifically to identify, bid and attract sporting events to the region.
Wood graduated from Goodrich (Mich.) High School, earned a Bachelor of Business Administration degree from the University of Michigan and a graduate degree from the ABA Graduate School of Commercial Banking.
Wood and his wife, Susan, have one daughter, Alison, and a son, Taylor.
Patrick McTigue
Pat McTigue has worked in the automotive manufacturing business for over 30 years. He is currently Shareholder / Chairman of Michigan Rod Products Inc of Howell, Mich. as well as Founding Member of Shannon Precision Fastener LLC of Auburn Hills, Mich., and a member of Emerald Steel Processing of Madison Heights, Mich. The three companies employ over 450 women and men. They have received multiple quality awards including Ford’s World Excellence Award, GM supplier of the Year for four years in a row, and FCA supplier of year.
His prior work history includes 12 years as director / general counsel and corporate secretary of Ring Screw Works and over 20 years as an attorney/ partner at Powers Chapman of Troy, Mich. Over the years, McTigue has served on numerous state, municipal and non-profit boards including the Mackinac Island State Park Commission, Troy Board Of Education, Troy Boys / Girls Club; Marian High School Board Chair and U of D Law School Alumni Board.
He earned a BA and JD degrees from the University of Detroit. He is married to his wife Vivian for over 53 years. They have two daughters Aimee and Kristin and two granddaughters Claire and Katie.
Jay Colvin
Jay Colvin joined the Lions in May 2016 as senior vice president of legal affairs and general counsel. He manages all legal matters pertaining to the corporate and business activities of the team, and also serves as corporate secretary for the Lions and Detroit Lions Charities.
Prior to coming on board with the Lions, Colvin was a partner at Bodman, PLC law firm where he practiced law for 27 years. While at Bodman, he acted as an advisor and attorney to the Ford Family for 25 years, including representing the Detroit Lions organization. Beginning his career as a certified public accountant, Colvin's areas of specialty at Bodman were estate and tax planning for high net worth families, as well as corporate and partnership taxes.
Additionally, Colvin has extensive experience consulting professional athletes on legal and wealth planning throughout their active and alumni careers including structuring business deals, contracts, charitable contributions and the formation and operation of charitable foundations.
Colvin's professional accolades include being listed on The Best Lawyers in America in the Trusts & Estates practice area since 2012, and named a 2014 "Top Lawyer" by DBusiness magazine. He currently serves on the Michigan Sports Hall of Fame Board of Directors where he is also the treasurer and serves as a trustee to several private foundations.
Colvin is a graduate of Wayne State University with a B.S. and a J.D., cum laude; Order of the Coif from the Wayne State University School of Law. He is married with three children.
Dr. Linda Narhi
Linda received her BS(Chem) in Chemistry, and Cellular and Molecular Biology from University of Michigan, her PhD in Biological Chemisty from University of California Los Angeles, and was an NIH postdoctoral fellow at UCLA before joining Amgen. Linda has worked in Biotechnology for more than 30 years, retired from Amgen recently and is currently consulting, while continuing her involvement with USP, UCLA etc. She is on the expert panel for particles with the USP, the industrial advisory board for the UCLA Bioengineering dept., and is an adjunct Professor at UCSB in the MCDB department. She is also leading a cross-organization effort to study the characteristics and potential immunogenicity of aggregate of MAb through the AAPS, and is a co-chair for the 2021 Gordon Research Conference on Vaccine and Bio therapeutic development (this is the second meeting of this RC, the first to involve equal participation from industry and academia).
Her most recent responsibilities at Amgen were leading the strategic external engagement and technology development efforts of the process development organization. Her areas of research/interest include protein structure/function relationships, solution stability assessment of protein-based therapeutic candidates, development and implementation of predictive assays for protein stability to process, storage and delivery conditions, and of assays to assess biological consequences of product quality attributes, especially protein aggregates.
During her time at Amgen she led the Biophysics/higher order structure group, started and led the forensic group for particle analysis, and was involved in developing the manufacturability aspects of candidate selection, protein engineering, etc.
Linda is the loving aunt of Morgan Kozole.
Dr. Diane Ullman Narhi
Diane Narhi MD received her undergraduate degree from the University of Michigan and her MD degree from Wayne State University School of Medicine in Detroit. She completed her training in internal medicine at Wayne State and her rheumatology fellowship at UCLA. She then was an adjunct assistant professor at UCLA and was on the clinical staff there for many years. She was in private practice for 31 years in Simi Valley and was the first female chief of staff at Simi Valley Hospital. She is board certified in internal medicine and Rheumatology. She is a fellow of the American College of Rheumatology.
Dr. Narhi is married with one grown daughter. She enjoys skiing, boating, reading, traveling and riding her horse Peppy. She is currently a rheumatology consultant for Dignity Health Medical Group of Ventura County.
Diane is also the loving aunt of Morgan Kozole.
Christina Mascarenhas Ftikas
Christina is a parent advocate for BPAN and is the loving parent to Lexi and Lukas.
In her current role as a Senior Global Accounts Director at Xerox Corporation she is responsible for resource and partner management, multi-million dollar P&L management, implementation of new IT based service workflows, and service level adherence. Christina has an MBA in Global Business and Marketing from Rutgers University.
ADVISORS
Kevin Kozole
Kevin Kozole has worked in the automotive industry for over 25 years. He is currently the Director of Sales for the Maxton Group, an OEM accessories company. Kevin graduated from Fr. Gabriel Richard in Ann Arbor and earned a Bachelor of Science Degree from Michigan State University. Kevin is the loving parent of Morgan and Connor and husband to Kelly Kozole.
Kaci Kegler
Kaci serves as director of one-year master’s programs at the University of Michigan Ross School of Business. She leads comprehensive program management strategies that range from student admissions and enrollment to industry relations and alumni engagement. Kaci began her career in higher education as a director of development, focused on corporate fundraising and grant acquisition. She has since led various nonprofit fundraising campaigns on a volunteer basis. Kaci holds degrees in graphic design and printing management from Ferris State University.
Kaci and her husband, Brian, are parents to three amazing children: Nolan, Elle and Theo. Kaci and Brian have been passionate advocates for BPAN awareness and research since Elle’s diagnosis in 2016.