2021 Virtual Summer Conference – Day 1 – POR

Assista às apresentações do primeiro dia da Conferência Virtual de Verão de 2021

Introdução às sessões 1 e 2 – Dr. Alan Hakim

Dr. Alan Hakim

I am an Acute Physician and Rheumatologist with a specialist interest in heritable disorders of connective tissue. I received my Bachelors and Masters degrees in Medicine from Cambridge University and Addenbrookes Hospital; trained in Medicine at Addenbrookes in Cambridge and then University College London Hospitals, and received my consultant certification and Fellowship of the Royal College of Physicians in 2000 and 2005 respectively.

It was a privilege to serve as the Chief Medical Officer of The Ehlers-Danlos Society through to 2020. I now support the Society as the Chief Operating Officer. I continue as a Member of the Society’s Medical and Scientific Board and as a Member of the Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.

Apresentação: abordagens integrativas à gestão de EDS e HSD – Drª Tina Wang 

Dr. Tina J Wang is a board certified Physical Medicine Rehabilitation physician specializing in Fascia. Dr. Wang practices a unique blend of Osteopathic, Integrative and Regenerative Medicine at her practice Tupelo Pointe. Dr. Wang is an Assistant Professor Loma Linda School of Medicine. Dr. Wang’s areas of academic interest is in the emerging field of Fascia. She travels the world to conduct research, give presentations, and attend various conferences.

Apresentação: Canábis – Dr. Jordan Tishler

Dr. Tishler is a Cannabis Specialist. Through his training in Internal Medicine and years of practice as an Emergency Physician, Dr. Tishler brings his knowledge, reason, and caring to patients here at inhaleMD, and through his advocacy work at the local and national levels.

Dr. Tishler graduated from both Harvard College and Harvard Medical School, trained at the Brigham and Women’s Hospital, and is faculty at both the Brigham and Women’s Hospital and Harvard Medical School.

Apresentação: Proloterapia – Dr. Fraser Burling

Fraser Burling (BHB, MBChB, Dip MSM, FRACP) is a rheumatologist and general physician with a sub-specialization in musculoskeletal medicine and Ehlers-Danlos syndrome (EDS). Trained in New Zealand, and graduating in 1993, he has been working in private practice since 2006. He went full-time private from 2012. He learned musculoskeletal medicine beyond the MSM diploma from Dr. Kenneth Orr, who trained under John Mennell, Jr. from St Thomas’ Hospital in London. Fraser has over 750 EDS patients.

Perguntas e respostas – Terapias complementares

Apresentação: Respiração, sono e postura – Dr. Leslie Russek 

Dr. Russek is Professor Emeritus of Physical Therapy at Clarkson University. She is an Orthopedic Certified Specialist physical therapist with a focus on Hypermobility Spectrum Disorder, headaches, and fibromyalgia. She has published in the areas of HSD, fibromyalgia and chronic pain. Current research involves prevalence and management of HSD, and PT education about HSD. She is dedicated to educating both health professionals and people with HSD about how to best manage the condition.

Apresentação: Fisioterapia Gestão das doenças relacionadas com a hipermobilidade – Drª Jane Simmonds 

Jane is a member of the EDS Society Medical and Scientific Board and is a medical advisor to Ehlers Danlos Support UK, the Hypermobility Syndromes Association (HMSA) and PoTS UK. Moreover she is Chair of the international physiotherapy EDS working group committee. Jane has authored more than 50 publications on EDS and hypermobility related topics and leads national and international EDS and hypermobility CPD training events for health and exercise professionals.

Workshop: Pilates e Terapia do Movimento – Jeannie Di Bon

Jeannie Di Bon is a Pilates and rehabilitation teacher, author of the book Pilates Without Tears and founder of the London-based studio Create Pilates. Jeannie’s areas of expertise are rehabilitation from injury and illness, chronic pain management and hypermobility syndrome and EDS. Being hypermobile herself, she was drawn to the field and now has a large client base with hypermobilty and EDS. Through working on her own body and with her clients, she has devised a structured Pilates-based programme called “Strengthen Your Hypermobile Core.”

Perguntas e respostas – Fisioterapia

Introdução às sessões 3 e 4 – Shani Weber

Shani Weber is the Community and Advocacy Director for the Ehlers-Danlos Society. She obtained her master’s degree from George Washington University and was an Early Childhood Special Education teacher prior to developing disabling symptoms that led to a diagnosis of Hypermobile EDS. Shani is honored to be able to continue educating and helping people with the Ehlers-Danlos Society.

Apresentação: Capacitando a próxima geração de pacientes que vivem com doenças crônicas e raras – Sneha Dave & Rosa Kelekian

Rose Kelekian

Rosa Kelekian (she/her) is a chronic illness patient and patient advocate in the San Francisco Bay Area. She is currently a graduate student at the University of California Berkeley, pursuing a master’s degree in Social Welfare. Since 2016, she has established and led patient/caregiver support programs at UCSF Benioff & Children’s Hospital Oakland, coordinated patient-led resource development for a national Learning Health System, and served on local and national patient advisory boards.

Sneha Dave

Sneha graduated from Indiana University in May 2020 where she majored in chronic illness advocacy as well as journalism. She created the Health Advocacy Summit and its program of Crohn’s and Colitis Young Adults Network with major funding from Helmsley Charitable Trust, the Lumina Foundation, the Cystic Fibrosis Foundation, and more to create support systems for adolescents and young adults with chronic and rare conditions across the U.S. and internationally.

Apresentação: Autoativismo e ativismo para os outros – Jessica Temple 

Jessica Temple, PsyD, ABPP-CN, is a board certified adult clinical rehabilitation neuropsychologist, chronic illness experiencer with Ehlers Danlos Syndrome, and creator and host of the new invisible chronic illness podcast The Spoonie Struggle. She aims to give individuals a voice, in an effort to relate, motivate, empower, advocate, and educate! She is also parent to two children with special needs, and hosts the special needs parenting podcast Thriving In The Midst of Chaos.

Apresentação: A jornada de um advogado EDS ECHO – Owen Moore

Owen Moore is the US EDS ECHO Programs Coordinator. Owen started his journey advocating for EDS and HSD after he lost his cousin to vEDS in April of 2019. For his High School senior project, Owen raised awareness and funds for EDS, donating over $3,000 to The EDS Society at the end of his senior year.

Throughout his advocacy experience, he built a strong connection with The Ehlers-Danlos Society and began volunteering in the summer of 2020, working on EDS Project ECHO. He is very excited to be joining The Society team part-time as the US EDS ECHO Programs Coordinator, continuing his journey in honoring his cousin’s life through his awareness efforts.

Apresentação: Vozes da Comunidade – Laura Romano

Laura is a 23-year-old recent graduate from Simmons University where they majored in Neuroscience and Behavior. They are planning to pursue a Master’s degree in Speech-Language Pathology this fall. Laura lives with Classical-like Ehlers-Danlos syndrome, Mast Cell Activation Syndrome, and Small Fiber Neuropathy. Laura was recently appointed to serve on the Commission on Disability in their hometown of Pepperell, Massachusetts.

Perguntas e respostas – Advocacia

Apresentação: Gestão da educação e do trabalho com uma doença crónica – Emily Rich

Emily is an occupational therapist serving adolescents and adults in a medical outpatient therapy setting at Tucson Medical Center in Tucson, Arizona. She specializes in treating individuals with chronic conditions, including Ehlers-Danlos syndromes and joint hypermobility, forms of dysautonomia, and persistent pain. She places a high value on patient-partnered, evidenced-based treatment. Emily is currently pursuing her Ph.D. in occupational therapy at Texas Woman’s University.

Workshop: Encontrar uma nova normalidade – Trabalho – Shani Weber

Shani Weber is the Community and Advocacy Director for the Ehlers-Danlos Society. She obtained her master’s degree from George Washington University and was an Early Childhood Special Education teacher prior to developing disabling symptoms that led to a diagnosis of Hypermobile EDS. Shani is honored to be able to continue educating and helping people with the Ehlers-Danlos Society.

Apresentação: Completar a educação superior – Marisa Bergfield

Marisa Bergfield

Marisa Bergfield is the Diversity and Inclusion Coordinator for The Ehlers-Danlos Society, working with the community to break down barriers for individuals around the world.

Currently, Marisa is a doctoral student in clinical psychology with a research interest in how Ehlers-Danlos syndromes and hypermobile spectrum disorders impact mental health and the diagnostic experience. Chronic pain and illness are two of her professional passions and she has helped establish multiple support and therapy groups for individuals experiencing isolation due to their health.

Perguntas e respostas – Gestão da educação e do trabalho

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