Jeni Adair grew up in a small town in Iowa. She left shortly after graduation from high school to pursue a career in shark research. Jeni worked briefly in the Bahamas supporting a team of shark researchers at the Bimini Biological Field Station during the summer before attending college. She studied Marine Biology at The University of Miami and graduated with a double major in Marine Science and Biology, and a minor in Chemistry. Upon graduation, Jeni worked as a Fisheries Biologist for the State of Florida in the Florida Keys. After a couple of years, she decided that she wanted a career that was more conducive to her dreams of one day having a family, and began attending Veterinary School at The University of Florida.
Although Jeni had suffered from headaches all of her life, they did not become severe until her second year of vet school in 1998. At that time, she took a Medical Leave of Absence, and was diagnosed with Chiari Malformation Syndrome. She spent the next 7 years in and out of surgery, due to multiple complications, and was forced to eventually withdraw from Veterinary school. Near the end of her surgeries, she met her husband, Erin Adair. They now have two boys, Jayden (age 11), and Sean (age 7).
Jeni was first introduced to ASAP during her many years of surgeries. She has attended several conferences over the years, and has gained valuable knowledge and support from connections made through ASAP. A few years ago, her son Jayden was diagnosed with Chiari Malformation, as well. This prompted Jeni to become even more involved with ASAP. She formed The Central Florida Chiari & Syringomyelia Support Group, and organized The First Annual ASAP Central Florida Walk & Roll for A Cure in 2018. She feels that it is important to provide support to newly-diagnosed patients, and parents of patients, in the same way that others have done for her. She is passionate about raising awareness of Chiari and related disorders. She has given presentations to each of her sons’ classes, and has spoken to representatives from several media outlets in preparation for The Walk & Roll.
Jeni contacted the Governor of Florida, Ron DeSantis, and spearheaded a drive to make the month of September “Chiari Awareness Month” in Florida. She likewise contacted the Mayor of her town of Apopka, Florida to create a similar Proclamation for the city. She has become an advocate for raising Chiari Awareness in her community and is working on ways to further promote awareness.
Jeni also is the Den Leader for her son Sean’s Cub Scout group. Having actively participated in Girl Scouts as a child, Jeni took upon this leadership role when Sean’s Scout Den was in need. Jeni has always stepped up to serve, whether it be volunteering in her sons’ school, her church’s children’s ministry, or at Harbor House, a shelter for survivors of domestic violence.
Jeni will bring the perspective of a patient as well as the perspective of a parent of patients to the Board. She will also bring her academic background and experience in the fields of biology and anatomy, resultant medical knowledge, as well as decades of experience as a patient. She brings a passion to raise awareness, and to search for better treatments, and, eventually, a cure.
Paolo Bolognese, MD
Lake Success, New York
A native of Torino, Italy, Paolo A. Bolognese, M.D. graduated magna cum laude in 1986 from the Medical School of the University of Turin. In 1990, he completed his neurosurgical training at the same university under the guidance of Professor Victor A. Fasano, an international leader in the field of high-tech applied to neurosurgery.
During this time, Dr. Bolognese became the leading worldwide expert in the field of laser Doppler flowmetry applied to neurosurgery and the top European figure in the field of neurosurgical intraoperative ultrasound.
In 1992 he accepted the invitation of Dr. Thomas H. Milhorat to transfer his laser Doppler research to the United States and to be retrained under Dr. Milhorat at SUNY Health Science Center at Brooklyn. At SUNY at Brooklyn Dr. Bolognese completed his residency in neurosurgery, his fellowship in management of Chiari I Malformation and related disorders, and served as chief resident in neurosurgery.
In August 2001, Dr. Bolognese joined Dr. Milhorat at the Department of Neurosurgery at North Shore University Hospital and Long Island Jewish Medical Center, as an Associate Director of the Chiari Center.
Along with Dr. Milhorat, he co-founded The Chiari Institute, where he served as Associate Director of until August, 2014.
In September 2014, he joined Neurological Surgery, P.C., as the Director of The Chiari Neurosurgical Center at NSPC.
Dr. Brian J. Dlouhy
Iowa City, Iowa
Dr. Brian J. Dlouhy is a pediatric and adult neurosurgeon at the University of Iowa Hospitals & Clinics and Stead Family Children’s Hospital in Iowa City, Iowa. Dr. Dlouhy graduated from New York University School of Medicine in 2007. He completed his neurosurgery residency at the University of Iowa Hospitals and Clinics in 2014. After finishing his residency in 2013, he completed an endoscopic and minimally invasive fellowship in Sydney, Australia followed by a pediatric neurosurgery fellowship at St Louis Children’s Hospital and Washington University in St. Louis, Missouri. He joined the Department of Neurosurgery at the University of Iowa in 2015 as an assistant professor.
Dr. Dlouhy treats all neurosurgical disorders but specializes in the treatment of Chiari malformations, syringomyelia, and disorders of the craniovertebral junction in patients of all ages, from infants to adults. This has led to numerous manuscripts published in peer-review journals and book chapters on the these topics.
In addition to his clinical activities, Dr. Dlouhy leads a human brain research lab to better understand Chiari malformations and cerebellar/brainstem function. A goal of his research is to better understand the causes and pathophysiology of Chiari malformations and determine better treatment strategies.
Dr Gerry Grant
Chair of Department of Neurosurgery
Gerald Arthur Grant, M.D., an internationally known surgeon-scientist, has been named the new chair of the Department of Neurosurgery at Duke University School of Medicine, effective April 1, 2022.
Grant returns to Duke from Stanford University, where he is currently an endowed professor and chief of pediatric neurosurgery.
In 2006, Grant joined Duke’s faculty as an associate professor in the Department of Surgery after serving in active duty in the United States Air Force. He was deployed to Iraq in support of Operation Iraqi Freedom. He left Duke in 2013 to become chief of pediatric neurosurgery and vice chair of neurosurgery at Stanford. He also serves an Associate Dean of Academic Affairs at Stanford.
“I am thrilled to welcome Dr. Grant back to Duke,” said Mary E. Klotman, M.D., dean of the Duke University School of Medicine. “A preeminent clinician, scientist and educator, Dr. Grant brings experience, knowledge and skills acquired over his distinguished 30-year career to guide our outstanding Neurosurgery Department into the future. His vision, collaborative spirit and leadership will be instrumental in advancing the School of Medicine’s mission of excellence in patient care, discovery, education, and community partnership.”
Grant specializes in treating pediatric and young adults with brain tumors and medically refractory epilepsy. His research focuses on innovative ways to open the blood-brain barrier to improve the delivery of novel drugs and immunotherapy to target brain tumors.
Grant is currently an investigator on several initiatives funded by the National Institutes of Health (NIH) relating to brain tumors, focused ultrasound, brain tumor immunotherapy and concussion. He is an author on 280 peer-reviewed journal articles, holds several leadership positions nationally, and serves on multiple editorial boards in neurosurgery.
Grant received his undergraduate degree in neurosciences at Duke University and his medical degree from Stanford University School of Medicine. He completed his residency in neurosurgery at the University of Washington in Seattle and fellowship in pediatric neurosurgery at Seattle Children’s Hospital.
Molly Lichtenstein was born and raised in Gaithersburg, Maryland, where she still resides. She will soon receive her BA in Early Childhood Education and plans to teach Kindergarten. Diagnosed at an early age with Chiari malformation, Molly has undergone multiple surgeries due to her complex condition.
Molly first become involved with the organization in 2015 and held her first Walk and Roll for a Cure! She feels the walk gives her a voice that she otherwise does not have. With the continued support of her family and friends, Molly organizes an annual walk in her community with a dove release in honor of Chiari and syringomyelia warriors.
Molly understands the need for awareness and support of programs to help the Chiari and syringomyelia community.
In 2017 Molly served on the ASAP Chiari & Syringomyelia Conference Committee. She worked with Bridget Maher to organize and manage the KIDS For A Cure program. She also designed the t-shirt logo used to represent the scope of the meeting. Thankful for the opportunities that ASAP has given her, Molly hopes to continue forging new paths and developing programs to benefit others.
Robert Keating, MD
Medical Advisory Board Chair
Robert Keating, MD is currently Professor and Chief of Neurosurgery at the Children’s National Medical Center in Washington, DC. Dr. Keating graduated from Georgetown University Medical School in 1983 and subsequently went to New York where he did his training in Neurosurgery at the Albert Einstein and Montefiore Medical Center in the Bronx. A fellowship in Pediatric Neurosurgery as well as Craniofacial Surgery followed at Einstein / Montefiore in 1990.
Subsequent to his training, Dr Keating served in the Navy and was stationed at the Oakland Naval Hospital from 1990-1994, during which time he served as the Chief from ’91 to ’94. He then returned briefly for 2 years to the Bronx where he was on staff at Montefiore Medical Center as well as the Bronx Municipal Hospital Center. He came back to Washington in 1996 to join the faculty at the Children’s National Medical Center and later became Chief of the Division of Neurosurgery in 2003 and Professor of Neurosurgery and Pediatrics in 2008. His past appointments include the President of the Medical Staff at the Children’s National Medical Center as well as Head of Credentials and he currently maintains a busy practice of pediatric neurosurgery, with an emphasis on tumors, Chiari malformations, craniofacial reconstruction, spinal dysraphism, spasticity and brachial plexus surgery. As a member of the American Society of Pediatric Neurosurgery and International Society of Pediatric Neurosurgery, he has published and presented extensively in the field. His publications include the previous texts, “An Atlas of Orbitocranial Surgery” and “Tumors of the Pediatric Nervous System” (2nd edition published in 2013 ) with current work on Neurosurgical Operative Atlas, (2nd ed. Goodrich JT, and Keating RF, Thieme) due for publication in 2020. He is also Chair, Medical Advisory Committee on the Board of the American Syringomyelia Alliance Project as well as a founding member of the Posterior Fossa Society and maintains long-standing membership in the CNS , AANS , ASPN and ISPN.
Ilene S. Ruhoy, MD, PhD
Ilene S. Ruhoy, MD, PhD is a board-certified neurologist in private practice in Seattle, WA and the medical director for the Chiari EDS Center at Mt. Sinai South Nassau Hospital. Originally from New York City, she received her MD at the University of Pittsburgh and trained in both pediatric and adult neurology at the University of Washington and Seattle Children’s Hospital with fellowship training in neuromuscular medicine and a focus on mitochondrial disease. She is a graduate of the University of Arizona Integrative Medicine Fellowship. Her PhD is in Environmental Toxicology from the University of Nevada. Dr. Ruhoy is the co-editor of Integrative Neurology, published by Oxford Press in July 2020 and the co-editor of Preventative Neurology issue of Seminar in Neurology to be published by Thieme Medical in November 2022.
Rich lives in Wyndmoor, Pennsylvania, a suburb of Philadelphia. He is a graduate of Lehigh University and Vermont Law School. He has spent the past 25 years as a public defender. For the past 20 years, he has represented exclusively juvenile clients.
He was born with Spina bifida, as well as Chiari II and Hydrocephalus. He had surgery at birth which successfully treated those conditions. A car accident in 1990 resulted in deteriorating neurological conditions and an eventual diagnosis in 1995, of hydrocephalus and syringomyelia. Several surgeries followed in an attempt to stabilize his situation.
Rich continues to work despite chronic pain and increasing neurological deficits. He is happy he found ASAP and its wonderful group of supported, compassionate and dedicated members. He is committed to spreading the word about Chiari, Syringomyelia and ASAP so that individuals diagnosed with these conditions have the support and access to services they need to advocate for the necessary treatment. He hopes that, with the support of ASAP and talented physicians and researchers, a cure will be found in the near future.
Carina Yang, MD, University of Chicago Medicine
Dr. Yang is a board-certified radiologist/neuroradiologist, Dr. Carina Yang, Associate Professor of Radiology, Vice Chair of Diversity & Inclusion, Director of Pediatric Neuroradiology, Faculty Director of Fellowship Accreditation, Graduate Medical Education University of Chicago Medicine specializes in pediatric neuroradiology with a focus on diagnosing and characterizing the full scope of head, brain, spine and neck conditions. Dr. Yang is an expert in interpretation of computerized tomography (CT) and magnetic resonance (MR) examinations, and promotes techniques for pediatric patients to minimize radiation exposure and performing testing without the need for extended sedation. Dr. Yang dedicates time to aid the medical researchers by suggesting the best imaging modalities and how to best evaluate imaging data when evaluating past approaches to treatment and planning innovative clinical trials. Her collaboration ensures an effective multi-disciplinary approach to analyzing clinical data, understanding patient scans, and expanding educational frontiers.