BOARD OF DIRECTORS
Eric Berning
President
Email: [email protected]
Eric Berning lives in Cypress, Texas, and was diagnosed with Chiari and syringomyelia in early 2003, at the age of 36. Despite chronic discomfort and intermittent loss of strength and function in his extremities since a young age, Eric’s condition went undiagnosed and misdiagnosed for many years, during which time he found himself living under the assumption that what he was experiencing must be “normal.” In late 2002, Eric’s chiropractor detected some neurological abnormalities which concerned him enough to not attempt manipulation of his cervical spine and instead insist upon referring him to a neurologist, even offering to make the appointment himself. Eric agreed to see the neurologist, and after a series of MRI’s on his head, neck, and back, Eric was officially diagnosed with CM/SM and, in turn, referred to a neurosurgeon for immediate evaluation. In April 2003, by this time an expectant father, Eric underwent decompression surgery. While not a cure-all, much of Eric’s symptoms were halted from further degeneration—and while he continues to live with chronic pain, Eric also continues to live with the upbeat hope that ‘it won’t get much worse’. Eric likes to focus on the positives in his life: case in point, just months after his diagnosis and decompression surgery, Eric and his wife Jennifer welcomed their son Edward into the world—thus making 2003 truly a year of great blessings.
Eric continues to work full-time managing a contingent workforce program for a large corporation. A diehard Cleveland Browns fan, Eric does his best at keeping up with his now 16-year-old son’s activities, as well as being an active member of his community. He has served as the committee chairman of his son’s cub scout pack and is currently a committee member in his boy scout troop, has actively led fundraising teams for several charitable organizations, held deacon and elder positions at church, was elected to his HOA board, and has volunteered countless hours at his son’s school functions. Eric is hard to keep down—he may have to slow down at times, but he does not like to stop. He maintains a pleasant demeanor and positive attitude regardless of the issues he is physically dealing with at any given moment. In 2012, Eric began attending the local ASAP support group meetings in order to connect with others living with CM/SM, and to lend a voice of understanding and comfort to others facing the same challenges he does. He likes to remind those with these conditions, “While we may live with pain, it does not have to define who we are.” Eric is excited to join the Board to help raise awareness of CM/SM, to find opportunities to share his experiences in an effort to bring hope, understanding and guidance to those who need and seek it, and to ultimately see a cure that ends CM/SM once and for all.
John Caemmerer
Vice-President
Email: [email protected]
John Caemmerer was born and raised in Long Island, N.Y. After getting married, he moved to New Jersey where he raised his family. John now resides in New York again and is self-employed in the construction industry.
John first became involved with the organization when a longtime friend invited him to a fundraising walk. Moved by the personal stories he heard that day, he made the offer to assist with future events. With a background in sales, he was an asset in promoting and developing events. After volunteering for a couple years, he joined the Board of Directors.
John is currently serving on several committees with a special interest in fundraising and raising awareness. He has served as Chair for the Conference Committee for a number of years. It is John’s belief that while we search for a cure, the work that ASAP performs serves to improve the quality of life for persons affected by SM, CM, and related disorders. He believes that by his service he can help people empower themselves to live a life that is defined by their abilities and accomplishments in spite of their diagnoses.
Annie Chapman
Treasurer
Email: [email protected]
Annie resides in Pearland, TX, a suburb of Houston, with her two sons, Jacob and Ethan. She obtained her Bachelors of Business Administration, with a concentration in Accounting, from Houston Baptist University and currently is the Chief Financial Officer in the live events industry.
.
Annie’s symptoms began in her early 20’s but it was not until her late 30’s that she was diagnosed with Chiari malformation 1 and syringomyelia, both in the summer of 2010. Her initial diagnosis indicated she did not have Chiari but did have a syrinx in her cervical and thoracic spine. She visited several neurosurgeons afterwards and each of them confirmed she did indeed have a Chiari malformation. After observing the symptoms for a year (numbness, chronic pain, balance issues, short term memory loss, etc) Annie decided to proceed with the decompression surgery in May 2011. One year after her surgery, the tonsillar descent has retreated. A long, but thin, syrinx still is present however.
Through ASAP and referrals from other Chiarian’s, Annie offers support to others preparing for decompression surgery. She understands what it is like to feel isolated and scared when faced with the reality of this rare condition. She continues to share her own success story with others struggling with Chiari and/or syringomyelia.
In 2011, Annie joined ASAP’s finance committee and in 2012 she was elected to the Board of Directors. She hopes to use her business and finance background, along with her personal experience with both conditions, to help ASAP continue on their goal to fulfill their mission “to improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure”
Michele Raye
Secretary
Email: [email protected]
Michele lives in Northern California with her teenage daughters. She has been volunteering with ASAP for over 3 years organizing and running the ASAP Bay Area Support Group and more recently the online ASAP Southern California Support Group. In addition to her work with ASAP, Michele also volunteers at the hospital where her daughter receives treatment. She is involved with the Department of Family Centered Care as well as with their support. She is working on forming a Family Advisory Council for Neurosurgery. She also runs a non-affiliate online Chiari & Co Prayer Group.
Michele has extensive experience with children and has worked in the childcare field with a wide range of ages. In 2005 after her children finished preschool, she began working for the local school district in special education. In 2010 she began homeschooling both her children while working but since 2012 she has been home full time. Her oldest daughter attends community college and is pursuing a degree in Journalism. Her other daughter is currently finishing high school with the hopes of working with animals.
In 2014 her youngest daughter suffered a 2nd degree traumatic brain injury after being thrown off a horse, head first, into a rail. Within a few years she was diagnosed with Chiari,psuedotumor cerebri, a spinal arachnoid cyst and a cerebrospinal fluid leak. Her daughter has had multiple surgeries including a VP shunt and has found that animals are a great distraction so she regularly volunteers to help foster kittens.
Michele loves being able to help others, offer support and connect with families through ASAP. In her free time she loves the beach, bible journaling, reading, gardening and coffee. Michele and her girls also try to get out at least once a month and go on some kind of adventure, exploring new places and spending time together.
Michele is excited to contribute in another capacity to support ASAP’s mission and vision in helping those affected by Chiari and Syringomyelia. As a parent, Michele is looking forward to the opportunity to be a representative for other parents and a voice for their children. This position will allow her to continue to learn and grow while expanding her circle of influence in serving the Chiari Community and strengthening her support for members and their families. It is her hope that even if our immediate situations can’t be changed, that we can find peace and contentment through support while continuing to seek and work towards better answers. Michele is thankful for this chance and is honored to be able to stand in the gap for others.
Directors At Large
Jeni Adair
Email: [email protected]
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
Paolo Bolognese, MD, graduated from the Medical School of the University of Turin where he completed his neurosurgical training in 1990.A native of Torino, Italy, Dr Bolognese graduated from the Medical School of the University of Turin. He trained twice in Neurosurgery, under Prof. Fasano (Turin, Italy) and under Dr. Milhorat (Brooklyn, NY). In 2001, Dr. Bolognese joined Dr. Thomas Milhorat and then co-founded The Chiari Institute. In 2014, he started the Chiari EDS Center at Mount Sinai South Nassau, along with Dr. Roger W. Kula. His Neurosurgical interests span from Chiari I Malformation to Craniocervical Instability, Tethered Cord, Styloid Hypertrophy, Idiopathic Intracranial Hypertension, and Intracranial Hypotension.
Dr. Brian J. Dlouhy
Iowa City, Iowa
Brian Dlouhy is a pediatric and adult neurosurgeon at the University of Iowa Hospitals & Clinics and University of Iowa Children’s Hospital in Iowa City, Iowa. He completed his neurosurgery residency at the University of Iowa working extensively under Dr. Arnold Menezes. He now works side by side with Dr. Arnold Menezes treating all disorders of the craniovertebral junction (CVJ) in children and adults.
Dr Gerry Grant
Chair of Department of Neurosurgery
Duke University
Gerald Grant, MD
Gerald 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.
Robert Keating, MDMedical Advisory Board Chair
Robert Keating, MD is currently the McCullough Distinguished Professor of Neurosurgery 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.
Molly Lichtenstein
Email: [email protected]
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.
Ilene S. Ruhoy, MD, PhD
[email protected]
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.
Richard Simon
Email: [email protected]
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
A board-certified radiologist/neuroradiologist, Dr. Carina Yang is an Associate Professor of Radiology, and has served as the Director of Pediatric Neuroradiology at the University of Chicago Medicine since 2013, 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 neuroradiological 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. She also serves as the Vice Chair of Diversity & Inclusion for her department, and is the Faculty Director for Fellowship Accreditation with the Office of Graduate Medical Education.