{"id":4705,"date":"2022-09-29T16:44:41","date_gmt":"2022-09-29T23:44:41","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=4705"},"modified":"2024-01-05T12:02:33","modified_gmt":"2024-01-05T20:02:33","slug":"inchstone-researcher-bios","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/fr\/inchstone-project\/inchstone-researcher-bios\/","title":{"rendered":"Biographies des chercheurs d\u2019Inchstone"},"content":{"rendered":"\"The\n

\n\t\tBiographies des chercheurs\n\t<\/h1>\n\t

Anne Berg, Ph. D.<\/strong><\/h3>\n

\u00c9cole de m\u00e9decine Northwestern Feinberg, neurologie<\/strong><\/h3>\n

The focus of Anne’s research for over 30 years has been the “natural” history of pediatric epilepsy with a specific emphasis on seizure outcomes, developmental and cognitive consequences the impact on quality of life, families and the implications for care and care models. In 2007, she played a key role in focusing NINDS research priorities on the cognitive, developmental, and behavioral co-morbidities of epilepsy and organized sessions at the AES meeting to investigate and identify research opportunities for improving patients’ outcomes. In 2013, she Co-Chaired the NINDS-sponsored Curing Epilepsies conference & organized and led the workshop, “Priorities in Pediatric Epilepsy Research: Improving Children’s Futures Today.” Anne was one of the initial founders of the Pediatric Epilepsy Research Consortium (PERC) which has grown to over 40 centers in the US.\u00a0\u00a0<\/p>\n

Elle se concentre actuellement sur le d\u00e9veloppement de ressources et de moyens pour faciliter la collecte rapide d'informations de grande valeur sur les capacit\u00e9s et les d\u00e9ficiences dans un large \u00e9ventail de domaines touch\u00e9s par les troubles du d\u00e9veloppement c\u00e9r\u00e9bral et les \u00e9pilepsies pr\u00e9coces. La voix des parents et tuteurs dans l'identification des priorit\u00e9s de recherche et la direction des enqu\u00eates est un \u00e9l\u00e9ment central de ces efforts. L'une des forces motrices de mes efforts de recherche est de d\u00e9velopper et d'utiliser des donn\u00e9es probantes pour transformer les attitudes et les approches \u00e0 l'\u00e9gard de l'\u00e9pilepsie pr\u00e9coce, d'une attitude futile \u00e0 une approche dans laquelle un diagnostic pr\u00e9cis peut conduire \u00e0 des th\u00e9rapies pr\u00e9cises et, en fin de compte, \u00e0 de meilleurs r\u00e9sultats pour la personne affect\u00e9e, la famille, et la soci\u00e9t\u00e9 dans son ensemble.<\/p>\n\t\t\t\t\"Anne-Berg\"\n\t\t\t\t\"chere-chapman\"\n\t

Chere AT Chapman, MBA, MHSc<\/strong><\/h3>\n

R\u00e9sultats du PDG Ardea<\/strong><\/h3>\n

With an Honours BSc in biology, Ch\u00e8re Chapman set out for a year in rural Japan as part of a global teaching and cross-cultural exchange program of the Japanese government. Following two years back in Canada for her Master’s of Health Science in Community Health and Epidemiology from University of Toronto, Ch\u00e8re returned in Asia as an HIV\/AIDS epidemiologist at the Communicable Disease Centre (CDC) in Singapore. Over the next decade, Ch\u00e8re did her MBA at London Business School before returning to Asia once again to establish a consultancy in Singapore and Vietnam developing multi-stakeholder partnerships with international NGOs and Fortune 100 companies. Ch\u00e8re has negotiated complex projects from Papua New Guinea to India to Bangladesh for organizations such as CARE International, Chevron, Visa, and The Clinton Foundation.\u00a0<\/p>\n

Ch\u00e8re’s East Coast Canadian roots eventually pulled her back to Nova Scotia where she is now CEO of Ardea Outcomes, a specialist contract research organization focused on patient-centered outcomes. Ch\u00e8re is a past board member for the University of King’s College and Touch Sala Bai, a charity fighting human trafficking in Cambodia. Chere is\u00a0currently an associate at Creative Destruction Lab Atlantic, a founder of Sandpiper Ventures, and the chair of ONSIDE, a multi-stakeholder organization driving inclusive innovation-driven entrepreneurship in Eastern Canada.\u00a0\u00a0<\/p>\n

Ch\u00e8re vit \u00e0 Halifax avec son mari Gord, leurs quatre enfants fous et leur adorable chiot pand\u00e9mique.<\/p>\n\t

Gabi Conecker, MPH<\/strong><\/h3>\n

Pr\u00e9sident et co-fondateur de Wishes for Elliott, International SCN8A Alliance et DEE-P Connections<\/strong><\/h3>\n

Gabi is mom to Elliott, now 10 years old, who struggles with one of the most severe SCN8A mutations. At diagnosis, the family received the one published article on SCN8A in children offering little to no guidance on care, treatment, or prognosis. Gabi founded Wishes for Elliott to fight for better treatment and research for SCN8A families. Even though she was still working full time building maternal\/child health programs in sub-Saharan Africa and caring for a severely medically fragile child, she was inspired to bring the passion and urgency of SCN8A families to the nascent but growing community of SCN8A researchers and clinicians – and do everything possible to improve understanding for better treatment and outcomes for all SCN8A children.<\/p>\n

Elle a cofond\u00e9 DEE-P Connections, en 2019, d\u00e9sesp\u00e9r\u00e9e de voir de meilleurs outils, ressources et recherches pour les familles les plus gravement touch\u00e9es, comme la sienne.<\/p>\n\t\t\t\t\"Gabi\n\t\t\t\t\"jayettav2-768x1024\"\n\t

JayEtta Hecker, MS<\/strong><\/h3>\n

Directeur ex\u00e9cutif et co-fondateur de Wishes for Elliott, International SCN8A Alliance et DEE-P Connections<\/strong><\/h3>\n

JayEtta est un \u00e9conomiste sp\u00e9cialis\u00e9 dans les analyses ind\u00e9pendantes des politiques publiques au cours d'une carri\u00e8re de 44 ans au sein du gouvernement f\u00e9d\u00e9ral. Elle a servi dans plusieurs agences f\u00e9d\u00e9rales, \u00e0 la Maison Blanche Carter, et en tant que cadre sup\u00e9rieur au sein de la branche de recherche du Congr\u00e8s du Government Accountability Office. Elle a fr\u00e9quemment t\u00e9moign\u00e9 devant des comit\u00e9s du S\u00e9nat et de la Chambre, fournissant des \u00e9l\u00e9ments de preuve tir\u00e9s des \u00e9valuations qu'elle a dirig\u00e9es sur des questions majeures de politique publique.<\/p>\n

Elliott was her first grandchild and she was an active caregiver and partner in his diagnostic odyssey. She partnered with Gabi, her daughter and Elliott’s mother, to form Wishes for Elliott to advance SCN8A research and create a lasting legacy for Elliott, who continues to serve as an inspiration for all who know him. She is Co-founder and Executive Director of the International SCN8A Alliance and DEE-P Connections, helping build innovative collaborations to accelerate research and to improve the outcomes of all those struggling with DEEs. <\/p>\n\t

Jenny Downs, BAApplSci, MSc, PhD<\/strong><\/h3>\n

Institut des enfants du T\u00e9l\u00e9thon<\/strong><\/h3>\n

Le Dr Jenny Downs est responsable du programme de recherche sur le handicap et co-responsable de l'\u00e9quipe sur le handicap des enfants au Telethon Kids Institute de Perth. Ses programmes actuels comprennent des recherches sur les maladies rares, notamment le syndrome de Rett, le trouble du d\u00e9ficit CDKL5, le syndrome de duplication MECP2 et le syndrome de Prader-Willi, ainsi que le syndrome de Down, l'autisme et la paralysie c\u00e9r\u00e9brale qui surviennent plus fr\u00e9quemment.<\/p>\n

Dr Downs led the development of gross motor and hand function measures for Rett syndrome, and a quality of life measure for children with intellectual disability, the Quality of Life Inventory – Disability. (QI-Disability). She is lead PI for the Australian site of an NIH funded US-Australian study developing and validating outcome measures for the CDKL5 Deficiency Disorder.\u00a0<\/p>\n

Sa vision est que tous les enfants ayant une vuln\u00e9rabilit\u00e9 ou un handicap d\u00e9veloppemental vivront avec des d\u00e9ficiences r\u00e9duites et une qualit\u00e9 de vie optimale, et que les r\u00e9sultats de la recherche seront distribu\u00e9s \u00e9quitablement dans la communaut\u00e9.<\/p>\n\t\t\t\t\"Jenny-Downs\"\n\t\t\t\t\"Wojnaroski\n\t

Mary Wojnaroski, Ph.D.<\/strong><\/h3>\n

Nationwide Children’s Hospital<\/strong><\/h3>\n

Mary Wojnaroski, PhD is a licensed clinical psychologist at Nationwide Children’s Hospital in Columbus, Ohio and an Assistant Professor of Pediatrics at The Ohio State University.\u00a0 She provides assessment and treatment of children and young adults with neurodevelopmental disabilities, including autism, ADHD, and cognitive delay.\u00a0 She has further specialization in assessment and treatment of children with neurodevelopmental conditions and medical conditions, especially epilepsy.\u00a0\u00a0<\/p>\n

Dr. Wojnaroski’s research and clinical interests have focused on early assessment and diagnosis of autism and other neurodevelopmental disabilities in children with epilepsy, developmental and behavioral assessment for children with severe to profound developmental disabilities, and psychological and behavioral consultation for children with developmental disabilities during hospital admission. \u00a0 Her career has been dedicated to improving developmental and behavioral care for individuals with neurodevelopmental disabilities and medical conditions, including creating an inpatient consultation\/liaison service designed to direct treatment after discharge, increase access to developmental evaluation for families with psychosocial barriers, and increase children’s participation in required medical procedures.<\/p>\n\t

Natasha Ludwig, Ph.D.<\/strong><\/h3>\n

Neuropsychologue<\/strong><\/h3>\n

Dr. Natasha Ludwig received her bachelor’s degree in Neuroscience from Union College and her master’s and doctoral degree in Clinical Psychology with emphasis on neuropsychology and cognitive neuroscience from Georgia State University. Dr. Ludwig completed an APA-accredited internship in neuropsychology rehabilitation\/pediatric psychology and a postdoctoral fellowship in pediatric neuropsychology at Kennedy Krieger Institute\/Johns Hopkins School of Medicine.<\/p>\n

Le Dr Ludwig a rejoint le d\u00e9partement de neuropsychologie du Kennedy Krieger Institute en 2019 et est professeur adjoint de psychiatrie et de sciences du comportement \u00e0 la facult\u00e9 de m\u00e9decine de l'Universit\u00e9 Johns Hopkins. Cliniquement, le Dr Ludwig fournit des \u00e9valuations neuropsychologiques aux enfants atteints d'une grande vari\u00e9t\u00e9 de probl\u00e8mes m\u00e9dicaux et neurod\u00e9veloppementaux, de la naissance \u00e0 l'\u00e2ge adulte, principalement au sein de la clinique des maladies cong\u00e9nitales\/g\u00e9n\u00e9tiques et de la clinique de r\u00e9adaptation pour l'\u00e9pilepsie et les traumatismes cr\u00e2niens.<\/p>\n\t\t\t\t\"Natasha-Ludwig\"\n\t\t\t\t\"Gunes\"\n\t

Gunes Sevinc, Ph.D.
\nResponsable de recherche, Ardea Outcomes<\/h3>\n

Gunes Sevinc has a multidisciplinary background with training and research experience in basic and clinical sciences. After obtaining her BSc degree in Psychology and her MSc degree in Mental Health Sciences, she pursued a career in clinical research as a psychologist, conducting in-person and remote assessments. She then earned her PhD degree in Neuroscience from Istanbul University and continued her career with a postdoctoral research fellowship at the Massachusetts General Hospital & Harvard Medical School Department of Psychiatry. Upon the completion of this fellowship, she joined Ardea Outcomes as a Research Manager, where she is leading the clinical research operations team, and advancing the science of goal attainment scaling through steering the company’s internal research program and strategy.<\/p>\n\t

Rebecca Hommer, Ed.D.<\/h3>\n

University of Maryland – Connections Beyond Sight &amp; Sound
\nLe projet DeafBlind du Maryland et DC<\/h3>\n

Le Dr Rebecca Hommer est enseignante aupr\u00e8s d'\u00e9l\u00e8ves malvoyants, sp\u00e9cialiste de la mobilit\u00e9 d'orientation et enseignante aupr\u00e8s d'\u00e9l\u00e8ves sourds-c\u00e9cit\u00e9s. Elle a obtenu son doctorat en \u00e9ducation de la North Central University, sa ma\u00eetrise en \u00e9ducation de l'Universit\u00e9 de Pittsburgh, de l'Universit\u00e9 du Maryland et de l'Universit\u00e9 de l'Utah. Elle a re\u00e7u des certifications li\u00e9es \u00e0 la vision de l'Universit\u00e9 Salus et de l'Universit\u00e9 de l'Utah.<\/p>\nDr. Hommer joined the University of Maryland’s DeafBlind Project, Connections Beyond Sight &amp; Sound in 2018 as an Education Specialist. Through her role as Education Specialist, Dr. Hommer provides assessments, evidence-based interventions, and academic support for students with dual sensory loss. In addition to providing support to students with deafblindness, she assesses students with cortical\/cerebral visual impairment and assists teams with developing interventions that support the student’s visual access to their educational materials as well as their academic, community, and
\nenvironnements domestiques.\n\t\t\t\t\"rebecca\"","protected":false},"excerpt":{"rendered":"

Researcher Bios Anne Berg, PhD Northwestern Feinberg School of Medicine, Neurology The focus of Anne’s research for over 30 years has been the “natural” history of pediatric epilepsy with a…<\/p>","protected":false},"author":4,"featured_media":0,"parent":2827,"menu_order":2,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-4705","page","type-page","status-publish","hentry"],"yoast_head":"\nInchstone Researcher Bios - 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