In late 2020, two new members joined the CNF Board of Directors.
One of those members is Dr. Bruce Cohen, who is now President-Elect of the Child Neurology Society (CNS), and as such, will have a place on the Child Neurology Foundation BOD as an ex-officio, voting member. Since 2015, CNF bylaws stated that CNS President and President-Past/Elect have ex-officio, voting BOD; while CNS Executive Director also serves as an ex-officio, non-voting member. This provision is to encourage transparency and collaboration between our organizations.
To give you a little more insight into Dr. Cohen’s career and expertise, we asked him a few questions for a new “Getting to know CNF” post.
Tell us what you do in your day job?
I currently hold two major roles at Akron Children’s Hospital, where I have worked for now 10 years. I am the Director of the NeuroDevelopmental Science Center (NDSC), a service line and department level Cost Center that contains the divisions of Neurology, Neurosurgery, NeuroBehavioral Health (Psychology and Neuropsychology), Physical Medicine and Rehabilitation, Developmental and Behavioral Pediatrics, and Neuroscience Research and Quality. We have about 60 providers and over 150 employees in the NDSC and, along with my administrative director, perform all the strategic planning and day-to-day management for all professional and business activities. Although Akron itself is a small city, we care for children over a geographic region that encompasses about 1/3rd of Ohio. I luckily have a lot of wonderful help from my clinical colleagues and administrative staff that are the real forces that make things run smoothly.
About a year ago, I began the role as Interim Vice-President and Medical Director of the Rebecca D. Considine Research Institute, which administers and oversees research and grants at the institution. I still have a lot to learn but have a great staff to help me.
Between these two roles, there is just enough time to manage my practice, which includes some patients I met in 1989 when I first moved to Northeast Ohio. I have been accompanied on this journey by a nurse that has worked with me since 1994, who came out of a brief retirement 10 years ago to join me at Akron Children’s Hospital.
I am married to Anna, whose tolerance is enormous, have two teenage kids who keep me young and two grown children finding their way in this world.
If you didn’t work in neurology, what would you have done instead?
If I was not a neurologist, I think I would have become a biochemical geneticist.
I had accepted a pediatric neurology residency position in my second month of internship and, at the time, I was falling in love with the human aspect of biochemistry – I realized I would be training with a neurologist that was an true expert in this field, Darryl De Vivo.
Fast forward 35 years and the overlap between these two fields is considerable. What I enjoy most are the long-term relationships with my patients and their families – some lasting as long as I have been in practice, over 31 years.
My patients that are here and those that have passed on have impacted my spirit. I had no alternative plans outside of medicine, but had considered going down the PhD route in chemistry until I was challenged by the Pauli Exclusion Principle and the mathematics of subatomic particles.
What are you most looking forward to as a CNF Board member?
Until recently, I never considered that I was an advocate – and went about my activities as a clinician and clinical trials investigator, with my after-hours time spent with my family, and working with the Child Neurology Society, American Academy of Neurology, Child Neurology Foundation and United Mitochondrial Disease Foundation, as well as time spent on a few local boards.
A few months ago, it occurred to me that most of what I do in life is advocate – whether it be for my staff, my patients, the practice of medicine or for my wife and kids. Over the last few years I have worked with the CNF on some projects and loved that the organization’s and staff’s focus acted as a metronome that kept the projects moving forward by corralling the dedicated yet overworked child neurologists. There is an ever-growing list of priorities that must be addressed by the CNF, that eventually will need to be the voice for our members in the discussion of expanded Medicaid coverage, telehealth medical care, transition of care, CHIP authorization, or financing for expensive medical supplies and medication.
I am thrilled to be part of the board that makes decisions regarding priorities and funding, but do not intend to back away from the hands-on-work that I have been doing all along.
I think the most fun and challenging aspect will be learning the skill set of how all this works at the organizational level and offer my input, slowly at first, to the CNF. I have accepted that this work will never end.
Which CNF Core Value do you identify with the most?
I think I am most interested in the collaboration aspect of the work of the CNF.
We are living in an era where governmental funding of health care is moving away from the fee-for-service model towards a total capitation model, which is easy to understand for healthy children with intermittent medical needs such as bone fractures, illnesses like appendicitis and even most forms of childhood cancer, where the financial aspects are understood.
This gets far more complex when we talk about children with chronic epilepsy or an illness, like SMA, that will require a multi-million dollar therapy. The solution will require working with state and federal governmental agencies, including both regulatory and legislative branches, payers including the state Medicaid(s) as well as commercial insurance companies, and the pharmaceutical industry.
The other part of collaboration is to drag, willingly or unwillingly, younger members of the field into advocacy, on whatever level they can participate. The voice of our patients needs to reach the highest levels of our government and payers, and the CNF can be that voice.
What do you love about CNF’s story?
The work of the CNF over the last two decades has transformed our patients’ and their families’ ability to access the necessary resources for education. The CNF has partnered with small and large patient advocacy groups that have expanded educational opportunities and research for the physicians and scientists that care for children with neurological illnesses. The mission has remained focused and the organization has a True North agenda.