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We cannot begin to thank her for the time and energy she has expended on our behalf. If you have never visited our Club house, please come in for a tour. While we revel in what we have accomplished in the last five years, it is only the beginning of what we need to do for anyone in Pittsburgh who is touched by this disease.

With best wishes, Robin J. Bernstein, Esq. Parrish, Esq. Ayers, Secretary Roy G. Dorrance Arthur G. D Patricia L. Siger Janet Simon, PH. Baum, CFP C. Conover Donald R. Fischer, M. Kristina Gerszten, M. Colleen Hennigan Timothy H. Reed, Jr. Judith R. Our innovative program is an essential complement to medical care, providing networking and support groups, workshops, education and social activities.

As a year prostate cancer survivor, he has always looked for places where they can learn, share, discuss and, yes — even laugh — about what they are experiencing. Even with good medical care, the support of other survivors was important to him too. But, unfortunately, staff changes impacted the group. An avid photographer, Jerry specializes in wildlife as evidenced by this amazing shot of a barn owl.

He displayed this photo in a recent member art show at Gilda's Club. Downey C. Calvin J. Bernstein Julie Colletti Dr. Yoga is a discipline that can be intimidating to outsiders. Yoga is a way to self empower and the students see and feel their strength return. Both her parents died from cancer and she was diagnosed with leukemia last year.

She has taught yoga since and teaches a combination of Hatha, Kundalini and Iengar styles. Each session, which is frequently full, varies for each student depending on his or her abilities and needs.

It gives those who have been doing yoga for awhile a chance to see how far they have come, and they offer hope to those who are just starting. Maribeth says that, in itself, is very healing.

And the teacher says she is always learning too. David Blinky Tracy L. Prizant, M. Shaw, Inc. Orbital Engineering, Inc. Mary Davitt and Dr. Ron was instantly likeable — warm and friendly, and had an immediate interest in the substance of Gilda's Club.

He was the Chair elect during my third year, then he became the Chair and asked me to remain on the Executive Committee. He always had a broad smile on his face and was so warm and willing to help. His spirit will always be with us. Ron was the one who kept the process moving and could assess a situation and problem solve better than anyone.

Ron took this assignment seriously and loved every minute of it. He made our lives so much easier as he worked very hard to keep everyone involved in creating our clubhouse on task. He did it with a sense of humor and within budget!

Devoted to family and friends. He was always there for you and is missed by all who were touched by his life. Ellen Lehman Joyce Leitman Dr. Barry Lembersky and Ms. Suzan Obagi Dr. Ellen Ormond Dr. Peter Sheptak Dr. David Sherer Joshua Sherkel Dr. Geoffrey Webster Dr. Federated Investors Foundations, Inc. Markel and Carol L. Buterbaugh Fund John R. Bruegger's Enterprises, Inc. McKee, L. CA, Inc. Schultz Interiors Inc. Koppers Inc. RC Holsinger Associates, P. Shadyside Academy Silberblatt Mermelstein, P.

Smith Removal Service, Inc. Their five month campaign culminated in a comedy event at the Improv in September. Every effort has been made to provide a complete list. Neonatal resting state functional MRI for disorders of consciousness, brain death, and neuro-prognostication.

Quantitative electroencephalography for early detection of elevated intracranial pressure in critically ill children- case series. Implementation of a quantitative electroencephalography curriculum for seizure detection in the pediatric intensive care unit- A quality improvement initiative.

Clinical, imaging and follow-up study of myelin oligodendrocyte glycoprotein associated demyelination in children: A Multicentric study. Pediatric acquired demyelinating syndromes in patients: a retrospective study in a tertiary center, southern Taiwan. Hospital based functional outcome of acute disseminated encephalomyelitis in children. Anti-myelin oligodendrocyte glycoprotein antibody in hereditary citrullinemia. Primary infection triggering myelin oligodendrocyte glycoprotein mog encephalomyelitis.

Analysis of plasma protein biomarkers in childhood onset multiple sclerosis. Mog associated disorders mad in children- a single center experience from india. Analysis of clinical, laboratory, imaging and electroencephalogram for 24 children with MOG antibody encephalomyelopathy. Comparison of subdural grid and stereoelectroencephalography monitoring in pediatric patients. Mosaic PCDH19 expression leads to aberrant neuronal migration and segregation in a transgenic mouse model.

Second Chance: Postoperative seizure outcome in children with intractable epileptic spasms who require repeat surgery.

ArgHis is cause of neonatal onset epilepsy. What outcomes should be measured to improve care for children with infantile spasms? Clinical and MRI characteristics of vigabatrin-associated brain lesions in children with tuberous sclerosis complex. Efficacy and safety of antiepileptic treatment with rapamycin in pediatric patients with tuberous sclerosis complex. Clinical utility of next generation sequencing in childhood Epileptic Encephalopathies. Gender differences in clinical demographics and psychosocial functioning in children with psychogenic non- epileptic seizures PNES.

Clinical characteristics of infantile spasms from a tertiary care hospital in Bangladesh: analysis of cases. Cathodal transcranial direct current stimulation ctDCS for children and adolescents with medically-refractory focal epilepsy. Parenteral Knowledge, skills and Attitudes towards children with Epilepsy in Egypt. Long-term epilepsy control, motor function, cognition, sleep and quality of life in a follow-up cohort of children with infantile spasms.

In new onset epilepsy, does levetiracetam as the first anticonvulsant impact intractabiity? Sleep characteristics among children with primary generalized epilepsy: A Polysomnography based study. Clinical characteristics and risk factors of epilepsy associated with encephalomalacia in pediatric patients. Comparison of different methods to induce sleep in pediatric electroencephalogram recording.

The incidence and the risk factors of seizure after hematopoietic stem cell transplantation in children in South Korea. A study of disclosure practices of parents of children with epilepsy CWE in a tertiary care center. Applicability of international league of epilepsy ilae classification of epilepsy ,, in children: an observational study in a resource limited setting. Ketogenic diet therapy for children with seizures secondary to neonatal hypoxic ischemic encephalopathy.

Epilepsy and neurodevelopmental outcomes in a cohort with Tuberous Sclerosis with epileptic spasms- a developing country perspective. Cathodal direct current stimulation induces drug-correctable potentiation of cortical excitability in TSC2 mouse in vitro. Efficacy and tolerability of adjunctive lacosamide in the treatment of pediatric patients with primary generalized tonic-clonic seizures: subgroup analysis of a double-blind, randomized, placebo-controlled trial.

Safety and tolerability of intravenous lacosamide in children with epilepsy: an open-label trial. Study of brain-type natriuretic peptide in children with epileptic seizures. The clinical utility of initiating continuous video-EEG monitoring after midnight among hospitalized neonates and children.

Next generation whole exome sequencing in the genetic diagnosis of early onset epileptic encephalopathy. Modified atkins diet mad versus low glycemic index treatment lgit in drug-resistant epilepsy in children: a randomized controlled trial.

Treatment of KCNT1-related epilepsy with similar clinical manifestations in two siblings with quinidine. Evaluation of adherence to pediatric status epilepticus management guidelines in Saudi Arabia.

Effect of delayed treatment of seizures on neurodevelopmental outcome in children with KCNQ2 encephalopathy. Children with Dravet syndrome do continue to benefit from stiripentol along adulthood. Novel treatment approach to refractory nonconvulsive status epilepticus in a patient with Angelman syndrome utilizing intravenous methylprednisolone.

Unsafe sleep practices are common among infants who require continuous video-EEG monitoring. Clinico-electroencephalographic features and outcome in pediatric convulsive status epilepticus: a longitudinal observational study. Discrepant expressive language localization by neuronavigated transcranial magnetic stimulation nTMS and functional magnetic resonance imaging fMRI in children and young adults with epilepsy.

Clinical profile, EEG findings and response to treatment in patients with tuberous sclerosis from tertiary care centre of North India. Clinical profile of a cohort of 47 children with absence epilepsies at a tertiary care hospital from North India attending Child Neurology Services over a period of 3 years :. Is newer ILAE classification of epilepsy better over the previous ones in children with cerebral palsy. Epilepsy phenotypes in children with Neurocutaneous Syndromes- a developing country perspective.

Imaging in pediatric patients with seizures in emergency department: Are we over-doing it? Outcome of children with seizures who presented to the emergency department over six months: A single center experience. Dissecting the effects of the host genetic background in phenotypes of Dravet syndrome. Utilization of the Addis Clinic telemedicine platform for epilepsy care, past experience and future opportunities.

Generator replacement with cardiac based VNS device in children with drug-resistant epilepsy. Long-term tolerability and retention of adjunctive brivaracetam in children with primary generalized or mixed seizure types: interim subgroup analysis of pooled data from two open-label trials. Seasonal distribution of febrile seizure and the relationship with respiratory and enteric viruses in Korean children based on nationwide registry data.

Impact of anti-epileptic drugs on blood carnitine and acylcarnitine levels in children - a study using tandem mass spectrometry. Comparison of serum Magnesium level among children with febrile seizure and control group: a systematic review and metanalysis. Predictor of recurrence after a first unprovoked seizure in childhood: A prospective study. Early differentiation of acute encephalopathy with biphasic seizures and late reduced diffusion in patients with febrile status epilepticus using phase lag index.

Pattern of medical treatment in children who underwent epilepsy surgery for lesional epileptic spasms. Intubation in patients presenting with seizures to a pediatric emergency department. Switch from enzyme-inducing antiepileptic drugs to new antiepileptic drugs in patients with epilepsy. Impact of intracranial monitoring technique on rates of surgical treatment and outcome in children with medically refractory epilepsy.

Clinical features of cryptogenic febrile infection-related epilepsy syndrome FIRES in two distinct cohorts. Surgery for early onset epilepsy, experience of an epilepsy surgery working group in colombia. Sexual and reproductive healthcare for adolescent and young adult women with epilepsy: a qualitative study of pediatric neurologists and epileptologists.

Efficacy of combining Ketogenic diet and Vagus Nerve Stimulation in children with epilepsy. Evaluating the effect of sedation on obtaining an informative magnetoencephalography MEG in pediatric epilepsy patients. The effect of weekends and holidays on time to treatment in pediatric convulsive status epilepticus.

Pharmacokinetic and tolerability comparison of xen pediatric formulation with ezogabine adult tablets. Efficacy of everolimus on epilepsy associated with tuberous sclerosis complex.

Experience of implementing integrated services for children with epilepsy in primary health care and primary health nurse role in an outreach financially- constrained district in Pakistan.

Neurodevelopmental and epilepsy outcomes of patients with infantile spasms treated in a tertiary care center. The curious case of a familial epilepsy syndrome with a distinct different etiology in one individual of the same family. Assessment of adrenal function after ACTH treatment in children with infantile spasms: a retrospective analysis of local practices and trends. Extreme photosensitivity and self-induced seizures - new features of WDR45 encephalopathy with dramatic response to Lorazepam.

Capturing seizures in clinical trials of antiseizure medications for kcnq2- dee. The importance of EEG findings as a risk factor of subsequent unprovoked seizure after febrile convulsion. The risk of future epilepsy in infants with severe hyperbilirubinemia and seizures.

Effective treatment of self-induced seizures and photosensitive epilepsy with Lorazepam. An online survey of caregivers of patients with kcnq2 developmental and epileptic encephalopathy kcnq2-dee.

Novel microsampling technique for use in a clinical trial of pediatric patients with kcnq2-dee. Genetic cases of early infantile epileptic encephalopathies in Russian population.

Childhood leukodystrophies and genetic leukoencephalopathies: A Multicentric epidemiological study. Using RNAseq for identification of aberrant splicing in patients with persistently undiagnosed rare genetic disorders. Phenotypic-genotypic spectrum of mitochondrial polymerase-gamma mutations: A multicentric retrospective review. Biallelic variants in CSTB can cause a developmental and epileptic encephalopathy with dyskinesia. A novel PYCR2 variant c. Experiences and attitudes toward vaccinations in families affected by mitochondrial disease.

FOXG1 triplication in a patient with West syndrome, hypotonia, severe developmental delay, postnatal microcephaly, and growth failure. Leigh syndrome associated to mt-nd6 mitochondrial gene mutation: a case report.

A Patient with xeroderma pigmentosum type A who has progressing heart complications. Remote actigraphy monitoring as a method of quantifying disability over time in patients with mitochondrial disease. A noble de novo EFNB1 mutation in a patient with global developmental delay and schizencephaly. A case report of heterozygous COQ8A gene mutation in patient with seizures and cerebellar symptoms. Advancements in the clinical interpretation of variants in ion channel genes related to epilepsy through functional computational modeling of missense variants.

Whole exome sequencing in children with suspected neurogenetic disorders: An effective, cost- and time- saving diagnostic tool. Autosomal dominant temporal lobe epilepsy with auditory features: a unique frameshift mutation variant.

Design of a comprehensive genetic and metabolic diagnostic platform for patients with AHC of unknown genetic cause. Genetic epilepsy and epileptic encephalopathies: experience from a tertiary care center.

Genetic testing in child neurology: A rare case of Optic atrophy secondary to Primary Co-enzyme Q defeciency. Pediatric tension-type headaches: co-morbidity with emotional, behavioral and sleep disorders.

Impact of an innovative telementoring program about pediatric headache and migraine for community medical providers. Pediatric trigeminal neuralgia - consider mpz mutations causing cmt with cranial nerve involvement. Correlation of pediatric headache-related functional disability inventory FDI and prolonged school absence.

The efficacy and safety of remote electrical neuromodulation for the acute treatment of migraine in adolescents with migraine. Increase in the cost of migraine headache treatment in pediatric hospitals. Professional and demographic profile of us native spanish-speaking child neurologists in the child neurology society. Clinical, laboratory, radiological features and outcome of autoimmune encephalitis in children and adolescents: A descriptive study.

Anti-glycine receptor antibody associated progressive encephalomyelitis with rigidity and myoclonus PERM revealing a variant in the autoimmune regulator AIRE gene in a four month old. A role for NLPR3 inflammasome in demyelinating lesions in cerebral adrenoleukodystrophy. Video-based eye tracking distinguishes follow up OMAS patients from controls. Clinical features and outcome in single live parenchymal neurocysticercosis and their correlation with serum matrix metalloproteinase a longitudinal observational study.

Low clearance rates in Neurocysticercosis: Is it time to review guidelines? Consequentialism: Long term outcome in childhood encephalitis is defined by aetiology and clinical course.

Comparison of clinical profile of children with infectious and autoimmune encephalitis: experience from a tertiary care center in north India. Thrombocytopenia in children with AES and its effect on outcome: a prospective observational study from a tertiary care centre of northern India.

Subacute Sclerosing Panencephalitis: Management challenge in developing countries. CNS infection due to Streptococcus anginosus. To study the clinical profile and the response to immunotherapy in autoimmune encephalitis in children in a tertiary care centre of North India. Dominant ADAR c. A case of juvenile-onset systemic lupus erythematosus complicated with various neurological disorders. Anti-nmda encephalitis relapse in a 9-year-old saudi boy: a case report and review.

Acute necrotizing encephalopathy of childhood: A multicenter experience in Saudi Arabia. Clinical spectrum and outcome of autoimmune encephalitis in an Argentinian pediatric cohort. Surgical options for treatment of spasticity in children with hereditary spastic paraplegia. Clinically-feasible and objective method to use MRI to predict dystonic cerebral palsy.

Deep brain stimulation dbs as treatment of childhood onset dystonia: experience of 13 chilean patients. Clinical characterization of dystonia in children with periventricular leukomalacia.

Management practices and long-term follow up of pediatric functional psychogenic movement disorder at a tertiary care center. Utility of VMAT2 inhibitors in management of stereotypy in children: a series of six patients. Free automated dystonia identification using smartphone-quality videos acquired in outpatient clinic. Emergency deep brain stimulation in a girl with dystonic storm due to GNAO1-associated hyperkinetic- dystonic movement disorder.

Validity of neuropathic and nociceptive pain ratings in adults with cerebral palsy. PEDiDBS update on the international registry of pediatric patients undergoing deep brain stimulation. Anti-NMDAR encephalitis induced super-refractory status dystonicus: response to pallidal deep brain stimulation.

Efficacy and safety of abobotulinumtoxinA in pediatric lower limb spasticity PLLS : 2nd interim results from a phase IV, prospective, observational, multicenter study. Profile of children with movements disorders metabolic and genetic causes : single center study.

Provider education programming boosts knowledge around diagnosing tourette syndrome. The effect of one year intrathecal baclofen treatment in children and adolescents with dyskinetic cerebral palsy. High practice variability in cerebral palsy diagnosis: a need for clarification of the consensus definitions? Selective loss of parvalbumin expressing GABAergic neurons in the globus pallidus of an animal model of dystonic kernicterus. Brain structural and microstructural alterations in Children with Spastic diplegic cerebral palsy.

Inter-relation between quality of life, hand functioning and cognitive abilities of CP children: prospective randomized study. Incidence and risk factors for cerebral palsy and hypotonia in children with congenital heart disease. Efficacy and safety of low dose penicillamine therapy of neurologic Wilson disease—A prospective observational study.

Transient segmental myoclonus following combined liver-kidney transplant: a case report. Flying under the radar: the diagnostic dilemma for low excretor Glutaric Aciduria Type 1 with insidious presentation.

Feasibility of using plasma extracellular vesicles as a tool to discover novel biomarkers of brain injury and development in very preterm infants: a pilot study. Kernicterus Spectrum Disorders Diagnostic Toolkit: validation using retrospective chart review.

Restricted diffusion in the splenium of the corpus callosum is specific and predictive for seizure in neonates with hypoxic ischemic encephalopathy: a retrospective chart review. Long-term developmental and seizure outcomes in neonates with acute perinatal brain injury.

Long term prophylactic anticonvulsant uses on neurodevelopmental and neurophysiological outcome in asphyxiated neonate with encephalopathy. Quantitative assessment of electroencephalograms from preterm infants aged 24—25 postmenstrual weeks. Neonates and infants with neurological manifestations verified by electroencephalography and neurological imaging: a cohort study, Quito Ecuador.

How common is misdiagnosis of neonatal hypoxic-ischaemic encephalopathy HIE in babies offered therapeutic hypothermia? ACTA1 gene mosaicism manifesting as congenital fiber type disproportion with brain white matter lesions. Neurodevelopmental clinic for high-risk neonates in a low-resource country. Long-term neurological outcomes in children who suffered from cerebellar injury as neonates.

Brain MR angiography in pediatric neurological disorders: clinical manifestations and diagnosis in abnormal brain MR angiography at a single center. Clinico-radiological correlation for establishing etiology of cerebral palsy in children aged years. Is MRI always necessary in patients with papilledema without atypical features? Vitamin responsive neurological disorders in childhood and adolescence: Experience from teaching hospitals in India. Pyruvate dehydrogenase deficiency- presenting as episodic paralysis in a three year old girl.

Pitfalls and promises in the diagnostic odyssey of juvenile neuronal ceroid lipofuscinosis CLN3 Batten disease. Evaluation of clinical rating scales in adrenoleukodystrophy: major functional disabilities mfd versus neurologic function score nfs. Clinical, radiological and ophthalmological follow-up, after 4 years of hydroxocobalamin dose intensification, in early onset cblC and cblA deficiency patients. Twenty-two-year clinical course of a patient with thiamine-responsive PDHC deficiency.

Cerebral folate deficiency in two siblings with compound heterozygous variants of the SLC19A1 reduced folate carrier. Biotinidase deficiency a treatable IEM with infantile onset epilepsy and cutaneous involvement: Clinical profile and neurodevelopmental outcomes in five children at a tertiary care hospital in North India.

A boy with IARS2-related mitochondrial disease presenting with dilated cardiomyopathy. Recognition of acquired versus congenital etiologies in developmental regression.

Time course of serum neuron-specific enolase NSE levels from infancy to early adulthood in a female patient with beta-propeller protein-associated neurodegeneration BPAN. Late-onset Leigh syndrome with mild neurological manifestations associated with the m.

CAD deficiency: clinical features, molecular genetics and therapeutic intervention. Expansion of the clinical spectrum associated with NDUFS8-related disorders to include progressive leukodystrophy. Cobalamin E deficiency, a rare metabolic cause of pediatric neurodegeneration with peripheral neuropathy. Understanding the experience of the mitochondrial disease community during the covid19 pandemic. Combination therapy with nusinersen and AVXS a real-world clinical experience.

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