Each year, the WPC invites some of its Organizational Partners to discuss their work serving the Parkinson’s community. These highlights may be focused on specific programs, innovative outreach projects, or clinical studies. The goal of these highlights is to allow for the community to learn from each other, in order to find ways to collaborate, reduce duplication, and to inspire more innovative thinking around the work being done for the Parkinson’s community.
If you would like to see a discussion added to this series, or would like to support this series, please email eli@worldpdcoalition.org.
About It is estimated that 110,000 United States Veterans are living with Parkinson’s disease (PD). In 2001, the Department of Veterans Affairs (VA) established the six Parkinson’s Disease Research, Education & Clinical Centers (PADRECCs) to provide state-of-the-art clinical care, education, research, and national outreach to Veterans with PD. Later, the National VA Parkinson’s Disease Network was formed which includes the PADRECCs and over 60 PADRECC Associated Sites offering convenient access to specialized movement disorders care to Veterans across the US. The VA provides a wealth of benefits and resources to eligible Veterans. Join us to learn more about the National VA PD network, specialized care provided, benefits available through the VA, and the relationship between PD and toxin exposure for US Veterans.
Target Audience: Veterans with PD, their care partners and anyone interested in learning more about expert PD care at the VA.
Panelists:
Annie Li Wong is a Movement Disorders Nurse Practitioner and PADRECC-San Francisco's Associate Director of Education. She co-coordinates PADRECC's national webinars for providers and allied healthcare professionals. She is also the Coordinator for the Deep Brain Stimulation program and runs the local support group for people with Parkinson's and their caregivers. She earned her undergraduate degree at the University of California, Davis, and her Master of Science as a Gerontological Nurse Practitioner at the University of California, San Francisco (UCSF).
John Duda, MD - National VA Parkinson’s Disease Network is a board-certified neurologist and a Professor of Neurology at the Perelman School of Medicine of the University of Pennsylvania. He is also the Director of the National VA Parkinson’s Disease Network. Dr. Duda has been at the Philadelphia VA PADRECC for over 20 years and enjoys providing care for Veterans, teaching doctors in training and doing research to better understand Parkinson’s disease and related problems. He has a particular interest in helping Veterans fight back against Parkinson’s disease and started the Brain Wellness Clinic to help teach how exercise, diet, sleep, stress reduction and social connection can help the brain. He is also the Co-Director of the Philadelphia VA Center for Neurotrauma, Neurodegeneration and Restoration which is a group of researchers trying to develop new ways to understand and treat Parkinson’s disease, traumatic brain injury and other problems. He has received research grants from the Department of Veterans Affairs, NIH, the Michael J. Fox Foundation for Parkinson Research, and the Department of Defense and has authored more than 150 scientific publications.
Gretchen Glenn - Philadelphia VA PADRECC has served as Social Worker and Associate Director of Education for the Philadelphia VA PADRECC since 2003. She focuses her practice on adjustment to a chronic illness, disease education, supportive counseling and community outreach for Veterans and families affected by PD and related movement disorders. Ms. Glenn also serves as Chair of the National VA Parkinson's Disease Network Education Committee, which is responsible for providing education and outreach opportunities to VA and non-VA healthcare providers across the country on the care of Veterans with PD. Ms. Glenn has dedicated her career to helping people cope with chronic illness and end-of-life issues.
Program offered in English with Spanish subtitles (closed caption)
Programa ofrecido en inglés con subtítulos en español
WPC Partner Highlight – Women’s Parkinson’s Project Women with PD – Unmet Needs of Women Living with Parkinson’s Disease: The Gaps & Controversies
Presentación de Socio destacado de la WPC - Proyecto de Mujeres con Parkinson Mujeres con EP - Necesidades insatisfechas de las mujeres que viven con la enfermedad de Parkinson: brechas y controversias
About Forty percent of people living with Parkinson’s are women and in fact in some Asian countries more women than men live with PD. Women have a longer time to diagnosis and less access to neurologist care and are underrepresented in research. Women and men seem to differ in symptomology, yet treatment is a one size fits all. Whilst other chronic diseases such as cancer are utilizing sex and gender differences to personalize treatment, women with PD receive treatment irrespective of these differences. Sex differences such as body weight, drug metabolism, and hormones all need to be considered as do the gender differences of caregiving responsibilities within the family along with occupational and other competing demands when treating women with PD. In this webinar, the panel of authors will discuss these issues and more from the recently published paper Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies. The panel will also answer questions from attendees.
Alrededor de un cuarenta por ciento de las personas que viven con Parkinson son mujeres y, de hecho, en algunos países asiáticos, hay más mujeres que hombres con la EP. Las mujeres tardan más en ser diagnosticadas y tienen menos acceso a la atención de los neurólogos y están infrarrepresentadas en la investigación. Las mujeres y los hombres parecen diferir en la sintomatología, pero el tratamiento es estandarizado. Mientras que otras enfermedades crónicas, como el cáncer, utilizan las diferencias de sexo y género para personalizar el tratamiento, las mujeres con Parkinson reciben tratamiento sin que se tengan en cuenta estas diferencias. Las diferencias de sexo, como el peso corporal, el metabolismo de los fármacos y las hormonas, deben tenerse en cuenta, al igual que las diferencias de género en cuanto a las responsabilidades de cuidado en la familia, junto con las exigencias laborales y otras demandas que compiten con el tratamiento de las mujeres con Parkinson. En este seminario web, el panel de autores discutirá estas cuestiones y otras más del documento recientemente publicado Necesidades no cubiertas de las mujeres que viven con Parkinson: brechas y controversias (Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies). El panel también responderá a las preguntas de los asistentes.
Moderator: Richelle Flanagan, Registered Dietitian, WPC Ambassador 2023, PD Avengers Founding Member, Co-Founder Women’s Parkinson’s Project, Founder My Moves Matter, Ireland Panelists: Dr. Soania Mathur, MD, PD Advocate, Co-founder PD Avengers, Founder Unshakeable MD, Ontario, Canada Professor Elena Moro, MD, PhD, Professor of Neurology at the faculty of medicine of the Grenoble Alpes University in Grenoble, France. Co-chair of EAN Task Force on Gender and Diversity issues in Neurology Dr. Indu Subramanian, MDS Parkinson’s Center of Excellence at the West Los Angeles Dr Veteran’s Hospital and UCLA Hospital Dr. Adrienne Keener, MDS Parkinson’s Center of Excellence at the West Los Angeles Dr Veteran’s Hospital and UCLA Hospital Dr. Annelien Oosterbaan, MD/PhD, PD Advocate, Gynaecologist, The Erasmus University Medical Center, Netherlands Dr. MariaTeresa Ferretti, PhD, Co-founder and Chief Scientific Officer, Women's Brain Project, Switzerland
Moderadora: Richelle Flanagan, dietista titulada, embajadora de la WPC 2023, miembro fundador de PD Avengers, cofundadora del Women's Parkinson's Project, fundadora de My Moves Matter, Irlanda Panelistas: Dra. Soania Mathur, MD, defensora de la EP, cofundadora de PD Avengers, fundadora de Unshakeable MD, Ontario, Canadá Profesora Elena Moro, MD, PhD, profesora de neurología en la facultad de medicina de la Grenoble Alpes University en Grenoble, Francia. Copresidente del Grupo de Trabajo de la EAN sobre cuestiones de género y diversidad en neurología Dra. Indu Subramanian, Centro de Excelencia de Parkinson de MDS en el West Los Angeles Veterans Hospital y el Hospital de UCLA Dra. Adrienne Keener, Centro de Excelencia de Parkinson de MDS en el West Los Angeles Veterans Hospital y el Hospital de UCLA Dra.
Annelien Oosterbaan, MD/PhD, Defensora de la EP, Ginecóloga, Centro Médico de la Erasmus University, Países Bajos Dra. Maria Teresa Ferretti, PhD, Cofundadora y Directora Científica, Women's Brain Project, Suiza
Resource: Subramanian I, Mathur S, Oosterbaan A, Flanagan R, Keener AM, Moro E. Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies. Mov Disord. 2022 Jan 20. doi: 10.1002/mds.28921. Epub ahead of print. PMID: 35060180.
Recurso: Subramanian I, Mathur S, Oosterbaan A, Flanagan R, Keener AM, Moro E. Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies. Trastornos del mov. 2022 Ene 20. doi: 10.1002/mds.28921. Publicado antes de la impresión. PMID: 35060180
If you would like to know more about the work of the Women’s Parkinson’s Project, you can sign up for their newsletter.
Si desea saber más sobre el trabajo del Proyecto Parkinson para Mujeres (Women’s Parkinson’s Project), puede suscribirse a su boletín de noticias.
Made possible with support from Kyowa Kirin.
Hecho posible con el apoyo de Kyowa Kirin.
Spanish version coming soon.
2021
January, 2021
WPC Partner Highlight – Parkinson’s UK
About Parkinson's UK is undergoing a pioneering re-design of its Information and Support services. The new service pathway, called Parkinson's Connect, will offer personalized support, information and advice and will recognize the different ways people want to access help, whether online or in person. It will be available for people with Parkinson’s. As well as their family, friends, and care community.
Moderator: Steve Ford, Parkinson’s UK (former CEO) Panelists: Katherine Crawford, Director of Services at Parkinson's UK Polly Cook, Digital Service Transformation Lead at Parkinson's UK Yvette Bordley, Service User Involvement Coordinator at Parkinson's UK and PwP Dr Annette Hand, Associate Professor of Complex Long Term Conditions Management, Department of Nursing, Midwifery and Health at Northumbria University
If you would like to learn more about Parkinson’s Connect, email Katherine Crawford kcrawford@parkinsons.org.uk.
2020
Aired in November, 2020
WPC Partner Highlight - LSVT Global
About Project Euphonia aims to improve automatic speech recognition software for people with speech impairments. Speech impairments may impact people who have Parkinson's disease and related conditions (e.g., Parkinson’s disease (with or without deep brain stimulation), multiple system atrophy, progressive supranuclear palsy, corticobasal degeneration, essential tremor).
These speech impairments may make using devices like Siri, Alexa, or speech-to-text frustrating. If Project Euphonia's research proves successful, it will enable phones, computers, and other devices to recognize unique speech patterns that can occur because of these conditions. Moderator: Dr. Linda Olson, WPC Board Member, Panelists: Dr. Lorraine Ramig, LSVT Global’s Chief Scientific Officer Dr. Bob MacDonald Technical Program Director at Google
Phase II of Project Euphonia has OPENED. (as of August 2021)
The Project is currently seeking individuals with PD and other neurological conditions to record samples of their speech in an effort to help improve devices such as Siri and Alexa to recognize unique speech patterns that can occur because of these conditions. Download and Share with the appropriate person: Flyer for Patients (people with Parkinson's and other Parkinsonisms) Flyer for Professionals
See below for more details regarding this project:
What: Google is working to make speech recognition more accessible to people with speech disorders. To do this, we need samples of disordered speech to train the system. LSVT Global is recruiting people with speech disorders to help! Upon completion of the project, participants will receive a $60 gift card from Google.
Who: People with Parkinson's disease (PD), PSP, MSA, post DBS, or Tremor with mild, moderate, or severe speech disorders.
How Can You Help? Sign up to participate if you have PD. If you are a clinician, refer your patients to the project! Participants will record samples of their speech online in the comfort of their own home, with the assistance of an expert speech clinician.
Searching for 1,000 patients' voices to help improve the quality of life for millions of people living with Parkinson's.
About The Canadian Open Parkinson Network (C-OPN) initiative will create an innovative national platform to bridge people, data, and resources to accelerate Parkinson’s disease discoveries.
C-OPN will be the first ever Canadian based national database and biobank collecting information on people with Parkinson’s (PwPs) and Parkinson plus syndromes across Canada. This is being pursued in order to more quickly connect potential study participants, researchers, and other experts to ultimately speed up the research process and to get us closer to a cure.
Moderator: Dr. Karen Lee, CEO, Parkinson Canada Panelists: Dr. A. Jon Stoessl Dr. Oury Monchi Dr. Edward "Ted" Fon
If you are Canadian and would like to sign up to be a part of the Canadian Open Parkinson's Network (C-OPN) visit this link to: SIGN UP FOR C-OPN.
John Duda, MD - National VA Parkinson’s Disease Network is a board-certified neurologist and a Professor of Neurology at the Perelman School of Medicine of the University of Pennsylvania. He is also the Director of the National VA Parkinson’s Disease Network. Dr. Duda has been at the Philadelphia VA PADRECC for over 20 years and enjoys providing care for Veterans, teaching doctors in training and doing research to better understand Parkinson’s disease and related problems. He has a particular interest in helping Veterans fight back against Parkinson’s disease and started the Brain Wellness Clinic to help teach how exercise, diet, sleep, stress reduction and social connection can help the brain. He is also the Co-Director of the Philadelphia VA Center for Neurotrauma, Neurodegeneration and Restoration which is a group of researchers trying to develop new ways to understand and treat Parkinson’s disease, traumatic brain injury and other problems. He has received research grants from the Department of Veterans Affairs, NIH, the Michael J. Fox Foundation for Parkinson Research, and the Department of Defense and has authored more than 150 scientific publications.
Gretchen Glenn - Philadelphia VA PADRECC has served as Social Worker and Associate Director of Education for the Philadelphia VA PADRECC since 2003. She focuses her practice on adjustment to a chronic illness, disease education, supportive counseling and community outreach for Veterans and families affected by PD and related movement disorders. Ms. Glenn also serves as Chair of the National VA Parkinson's Disease Network Education Committee, which is responsible for providing education and outreach opportunities to VA and non-VA healthcare providers across the country on the care of Veterans with PD. Ms. Glenn has dedicated her career to helping people cope with chronic illness and end-of-life issues.