The Ukraine Neurology Initiative
Written by Svetlana Faktorovich, MD, Neurologist and BBF Board Member
Prior to February 24, 2022, the day of the Ukrainian invasion, approximately 250,000 people, including 40,000 children, were living with epilepsy in Ukraine. Epilepsy, a potentially life-threatening neurological disorder of recurrent seizures, is also a frequent complication of traumatic brain injury, a common injury in a time of war. Having access to medication to treat this disease is critical to controlling it.
With the onset of war, millions of people across the country lost access to medication for their chronic illnesses and hospital supplies dwindled with overwhelming hospitalizations, including anti-epileptic medications. Desperate to help their pediatric patients who were rapidly running out of their medication, a group of Ukrainian neurologists, led by Dr. Olha Tychkivska, developed a spreadsheet of over 6,000 children with epilepsy around Ukraine as well as their whereabouts and their medication needs. With the help of her US based colleagues at the Boston Children’s Hospital Drs. Aris Hadjinicolaou, Agnieszka Kielian and Christina Briscoe, Dr. Tychkivska published a plea for medication to the medical community on social media, bringing to light a long standing deficiency in humanitarian aid: anti-epileptic medications, which previously have not been prioritized by humanitarian organizations.
Dr. Tychkivska’ s letter which was shared among neurology communities online in the early days of the war, bringing together a group of neurologists around the country including myself, many of whom had never met prior to the war. We created a task force known as the “Ukraine Neurology Initiative (UNI)” aimed to supply the most critical neurological medications to the children of Ukraine.A member of our group, Danielle Friedman, a neurology nurse, facilitated a meeting with Ozzy Samad, President of BBF back in March 2022, who immediately recognized an area of need and without hesitation created a neurology dedicated fund. This fund to date has raised more than $700,000 for the treatment of neurological illness.
Since then, we have worked closely with Dr. Tychkivska and her colleagues around Ukraine to ship and distribute the most critical neurological medications directly into the hands of patients and hospitals. These incredible on the ground clinicians and volunteers work tirelessly to track the needs of thousands of children with neurological illness around Ukraine, including those that have been displaced from their homes. By reassessing needs regularly, we have been able to purchase medications in greatest demand at any given time.
To date we have shipped more than $220,000 worth of critical medication to treat neurological illness including epilepsy, stroke, Parkinson’s disease and more. That includes medications purchased at cost with the help of some of our partners including Baptist Health System, Israel’s Ministry of Health/Sar El, Operation Mordechai as well as donated medications from the ROW Foundation. We’ve also shipped 8 EEG machines for the diagnosis of seizures to hospitals around Ukraine and over $200,000 worth of neurorehabilitation equipment.
The Ukraine Neurology Initiative has been one of the most successful humanitarian initiatives since Brother’s Brother Foundation was founded in 1968. It also represents a novel approach to aid distribution: partnering directly with public hospitals and trusted clinicians to distribute specialized supplies directly to patients rather than through a governmental agency. With the ability to regularly reassess local medication needs, we’ve been able to prioritize donated funds towards what’s needed most throughout the last 18 months. This has also allowed us to distribute even the most highly specialized medication, such for the treatment of a rare life threatening seizure disorder known as infantile spasms and a brain tumor disorder known as Tuberous Sclerosis Complex.
Another area of focus has been supporting those that have lost limbs in the war. Targeted attacks on civilian populations have left tens of thousands of individuals including servicemen and civilians with missing limbs, many of whom do not have access to prosthetic care in Ukraine. Working with a partner humanitarian organization Revived Soldiers Ukraine and prosthetic clinics in the US, including the Hanger Clinic and Medical Center Orthotics and Prosthetics (MCOP) we’ve been able to bring 10 injured Ukrainian servicemen with complicated, proximal amputations to the US for prosthetic care. We also arranged and helped fund a mission trip for an experienced prosthetist from the Hanger Clinic, Todd Stone, CPO, and his team to travel to Unbroken Ukraine, a newly built, public rehabilitation center in Lviv, Ukraine. During his time there, he trained local prosthetists on modern methods and brought equipment to fit 50 people with new limbs.
We are now 18 months into this horrific war and unfortunately Ukrainian people continue to suffer daily. Thanks to our generous donors, our work in Ukraine continues today just as it did the first week of the war.
Creating A Global Neurology Initiative
Treatment of neurological illness has been a long standing deficiency in the realm of humanitarian aid, brought to light by the Ukraine war. However conditions such as epilepsy are universal and our goal is to support neurology communities in need around the world. After a brutal earthquake devastated Syria this past February, we partnered with the Syrian American Medical Society, an organization that supports several hospitals in Northwestern Syria, to provide critical supplies including neurological medication and equipment. To date, we have sent over $70,000 worth of neurology medications for the treatment of seizures, acute stroke and other neurological conditions, an EEG machine for seizure detection to Syria as well as provided virtual access to educational material for their neurologists in training through the American Academy of Neurology.
We are also in the process of supporting neurology clinics in additional countries including Subsaharan Africa and Zambia.
Thank You To Our Organizational And Industry Partners:
American Academy of Neurology
Baptist Health System / Boca Raton Regional Hospital
Boston Children’s Hospital
Hanger Clinic, Foundation
International League Against Epilepsy
National Air Cargo
Natus Medical Incorporated
Revived Soldiers Ukraine
Sar El / Israel Ministry of Health