Ram Prakash (i.e. shining light) Epilepsy foundation (RPEF) is a charitable organization providing free neurological care to children and young adults affected with epilepsy and neurological disabilities. RPEF clinic is located in Tucker, Georgia and staffed by a board certified neurologist (Sumit Verma, MD), public health analyst (Nisha Kapil) and educational diagnostician (Mansi Arora). The clinic is run twice a week on Tuesday afternoons and Thursday mornings (8 hours per week). Families are able to meet the neurologist in a clean and safe environment. Detailed neurological history and examination is obtained during the clinic visit. The clinic is equipped with EEG/ EMG machines to diagnose seizures and motor disabilities. Genetic testing is available for those with inherited conditions. Patients’ neurological diagnosis are explained in detail, followed by appropriate counseling, treatment and follow-up. The foundation has been operating for last 6 months and has served 46 plus children and young adults. Thirty-two brain wave study tests were performed, 6 genetic tests completed, and 5 muscle studies done. The majority of patient’s seen were uninsured immigrants living in Clarkston, GA, and those who do not have access to a pediatric neurologist. Anti-seizure medications are routinely prescribed, seizure precautions and emergency seizure treatments discussed and seizure frequency is closely tracked. Counseling and advocacy to improve inclusion of affected children in special education programs at schools and school seizure action plans is emphasized. The future goal of the clinic is to provide multidisciplinary care including physical, occupational and speech therapy. We also plan to implement advanced therapeutics and access to assistive devices to improve mobility.
Injury prevention through early diagnosis, treatment and advocacy in a migrant population with epilepsy and neurological disabilities.
Improve access to neurological diagnosis and treatment for underserved, immigrant refugee patients living with epilepsy and neurological disabilities. Accompanying goal is to teach undergraduate, medical students, residents how to deliver compassionate care, embrace new cultures and address patient and family needs with patience, love and advocacy.
Medical care of underserved patients affected with epilepsy and neurological disabilities.
Seizures and neurological weakness are the leading cause of falls and injuries. Affected patients who remain undiagnosed and untreated are at high risk of serious injuries and death. Access to a neurologist may be difficult and diagnosis of neurological conditions may take a long time. In the interim, patients unaware of their medical conditions can be a threat for their own safety and that of those around them. The Detwiler foundation grants will help us support our ongoing outreach for those in need by providing free neurological consultation, testing and treatments. Discussing seizures and fall precautions, and teaching sessions for youth, family members and school teachers, nurses and support staff serving special needs children will promote a safe environment.
RPEFoperates a free clinic for children and young adults with neurological disorders and epilepsy in Tucker, GA. Our mission is to improve access to a neurologist and to provide early diagnosis and treatment for immigrant and refugee patients with seizures who are underserved and living under poverty. The foundation is attempting to help migrants adjust to the unfamiliar medical system and access critically needed services. We encourage and educate the families to advocate for themselves and provide a safe environment to receive care. We have been carefully listening to their concerns and provide the best possible guidance to help improve their quality of life.
The organization is invested in teaching undergraduate, medical students, residents to deliver compassionate care, how to embrace new cultures and address needs with patience, love and advocacy. The students come from Emory University and Children’s Healthcare of Atlanta and are able to see how medicine should be practiced in community settings. Overcoming language barriers, building trust and rapport with families and those affected especially ones suffering post-traumatic stress and separation from loved ones remains a focus.
Specific outcomes
- Improved seizure control and minimizing breakthrough seizures
- Prevention of falls and seizure related injuries
- Education of students, residents and fellows to improve their knowledge and teach them to provide compassionate and effective care peer-reviewed presentations on neurological diseases
How to measure success
Seizure frequency will be determined by patient diaries and logs for patients seen in the clinic. Medications adherence and number of pharmacy refills for anti-seizure medications will be noted. Emergency room use for breakthrough seizures and or injuries such as falls, fractures or lacerations will be recorded. Videos and pictures from parents will be reviewed for patients with seizure recurrence. Education program for students observing and working in the clinic will include a peer reviewed written report. Students’ participation in epilepsy awareness and fall prevention seminars will be tracked and they will be encouraged to do relevant presentations in various settings.