Date: SATURDAY, JANUARY 11, 2025 - VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: T.B.A.
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: SATURDAY, NOVEMBER 2, 2024 – VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: “Empowering yourself through knowledge: New Strategies in Treatment and Navigating Healthcare.”
Presenter: HAN S. LEE, M.D., Movement Disorder Specialist from Kaiser-Permanente, Comprehensive Movement Disorder Program GSAA - San Leandro/Fremont.
Dr. Lee grew up in Southern California and worked in aerospace engineering before switching careers into the medical field. He has worked in the field of bioinformatics, and co-founded an international health care data company, working with C-Level executives at IBM and leaders in data science, analyzing real time pandemic tracking. He was an advisor to various governments around the world, including Prime Minister (Taoiseach), Enda Kenny of Ireland, and served as a consultant for National Health Service in the United Kingdom. Dr. Lee, a board-certified neurologist, completed his neurology residency at University of California, Los Angeles (UCLA), and subsequently completed fellowships in Epilepsy (Intraoperative Monitoring) at UCLA, Neuromuscular Disorders at UCLA and Movement Disorders at University of Southern California (USC). Dr. Lee is the regional movement disorder specialist for The Permanente Medical Group and has had over 15 years of experience treating patients with movement disorders, including Parkinson’s Disease, Atypical Parkinsonism, Drug Induced Parkinsonism, Essential Tremor, Dystonia, Huntington’s Disease, Ataxia, and other Neurodegenerative disorders. He has treated thousands of patients with every type of dystonia during his career and runs a regional electrodiagnostic lab and movement disorder hub with referrals coming from all over Northern California. Dr. Lee has special clinical and research interest in Atypical Parkinsonism, Neuromodulation in Dystonia, Neurodegenerative Disorders, and clinical application of neurotoxins (botulinum toxins). Dr. Lee’s treatment philosophy revolves around dignity in healthcare and focusing on empowering patients to be proactive stewards of their physical and mental health.
These meetings provide an excellent opportunity to learn from each other and our guest presenters in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, SEPTEMBER 21, 2024 - VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: Informal Sharing/Discussion Meeting (No guest speaker)
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, JULY 13, 2024 - VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: FINDING CONTROL IN DYSTONIA - HOLISTIC REHABILITATION & TREATMENT OPTIONS
Presenter: LINCOLN BEAL, PT, DPT, Dystonia Program Director at Re+Active Therapy & Wellness in Los Angeles http://www.re-activept.com/
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, MAY 18, 2024 - VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: INFORMAL SHARING/DISCUSSION SESSION
Presenter: **UPDATE - JAYME JONES, CERTIFIED YOGA INSTRUCTOR who was scheduled to be with us will be rescheduled for a future date. We will instead have an informal/sharing discussion session.
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, MARCH 23, 2024 - VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: Deconstructing Dystonia: More than a Disorder of Movement
PLEASE NOTE: This meeting will not be recorded and Dr. Mahajan will most probably only be with us for the first hour. Please try to log-in on time so that you don't miss out. Thank you.
Presenter: Abhimanyu Mahajan, MD, MHS, Movement Disorders Neurologist and Assistant Professor of Neurology at the University of Cincinnati
Dr. Mahajan's primary research interests lie in the pathophysiology and clinical manifestations of dystonia. For his work on cervical dystonia and substance abuse using the Dystonia coalition database, he received the 2018 AAN Young Investigators award. He received the 2018 junior investigator award from the Parkinson Study Group (PSG) for work using magnetoencephalography (MEG) in cervical dystonia. His effort on exploring the clinical relationship between cancer and Parkinson’s disease, biological opposites, led to the 2020 AAN Alliance Award: Founders. He is a member of the 2022 MDS LEAP class. He was acknowledged as an Emerging leader in Dystonia research by the DMRF in 2023. His research has received funding from the Dystonia Medical Research Foundation (DMRF), Sunflower Parkinson’s disease Foundation and the Parkinson’s Foundation. Currently, he serves on the AAN Movement disorders Measurement Workgroup, MDS Dystonia Study Group, MDS Education committee and MDS Communications Oversight Committee.
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, JANUARY 20, 2024 - VIRTUAL ZOOM MEETING
Time: 1:00-3:00 PM (Pacific time)
Topic: Informal Sharing/Discussion Meeting (No guest speaker)
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, December 2, 2023
Time: 1:00-3:00 PM (Pacific time)
Topic: Informal Sharing/Discussion Meeting (No guest speaker)
Description: These meetings provide an excellent opportunity to learn from each other and offer and receive support in a comfortable and safe setting. Participation in any discussion is always completely voluntary. Some individuals like to listen and that is perfectly fine. You can also choose to not show your image or your name. Remember that our meetings are open to persons with ALL forms of dystonia and are not specific to any one form of dystonia!
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, October 28, 2023
Time: 1:00-3:00 PM (Pacific time)
Topic: CLINICAL TRIALS FOR DYSTONIA
Presenter: David Peterson, Ph.D., Researcher at UCSD and the Salk Institute
David Peterson is an Associate Research Scientist in the Institute for Neural Computation at UCSD and the Computational Neurobiology Laboratory at the Salk Institute for Biological Studies. Dr. Peterson received a Ph.D. in Computer Science, with an emphasis on Neuroscience, from Colorado State University. He has Bachelor’s degrees in Electrical Engineering and Business Administration from the University of Colorado, Boulder. The primary focus of his research is adult-onset focal dystonias. He is the Principal Investigator for research projects funded by the DoD’s Congressionally Directed Medical Research Program and the National Institutes of Health and is on the Medical & Scientific Advisory Council for the Dystonia Medical Research Foundation. He leverages advances in computational neuroscience to develop improved assessments for clinical trials and models of how the brain networks are altered in order to help identify future treatment strategies.
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, September 30, 2023
Time: 1:00-3:00 PM (Pacific time)
Topic: INFORMALSHARING/DISCUSSION MEETING (NO GUEST PRESENTER)
All are invited to join us for this informative virtual Zoom meeting. Please know that participation in any discussion is strictly voluntary. In addition, participants can choose not to show their image. Our meetings are a safe place where we respect one another and where we can share, learn from our guest presenters and one another and provide and receive support.
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, August 19, 2023
Time: 1:00-3:00 PM (Pacific time)
Topic: Neuro Rehabilitation approaches for dystonia care management.
Presenter: APURVA ZAWAR, DPT is a passionate neurologic physical therapist with expertise in treating movement disorders, educator, and mentor. She owns and practices at BeyondRehab, a digital Neuro-Rehab & Wellness clinic offering Telehealth services for individuals in California, Washington and Massachusetts. Her primary focus of work involves serving and managing movement disorder conditions such as Parkinson’s Disease, Dystonia, Functional movement disorder and Chronic Pain through an integrative care & personalized evidence-based care that caters to each person's unique needs and aspirations. In addition to her clinical work, Apurva is actively involved in research and serves as a board member of APDA- NW where she continues to advocate for enhanced care and support for Parkinson's community. You can learn more about her practice at www.beyondrehab.health
All are invited to join us for this informative virtual Zoom meeting. Please know that participation in any discussion is strictly voluntary. In addition, participants can choose not to show their image. Our meetings are a safe place where we respect one another and where we can share, learn from our guest presenters and one another and provide and receive support.
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, July 15, 2023
Time: 1:00-3:00 PM (Pacific time)
Topic: INFORMALSHARING/DISCUSSION MEETING (NO GUEST PRESENTER)
All are invited to join us for this informative virtual Zoom meeting. Please know that participation in any discussion is strictly voluntary. In addition, participants can choose not to show their image. Our meetings are a safe place where we respect one another and where we can share, learn from our guest presenters and one another and provide and receive support.
Please email Martha to RSVP and for the Zoom log-in information. We hope that you can join us!
Date: Saturday, May 6, 2023
Time: 1:00-3:00PM
Topic: MANAGING THE DAILY CHALLENGES OF DYSTONIA
Presenter: TOM SEAMAN, is a Certified Professional Life Coach in the area of health and wellness, and author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). Tom is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a blogger for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and Brain & Life Magazine. You can learn more about Tom and the work he is doing at www.TomSeaman.com
Date: Saturday, March 4, 2023
Time: 1:00-3:00PM
Topic: Development of the Mindset for Easing the Burden of Dystonia & Overview of the Puget Sound Dystonia Symposium on Coping with Dystonia, Depression & Anxiety
Presenter: PATRICK HOGAN, D.O., Director of Puget Sound Neurology, Tacoma, Washington
Date: Saturday, January 21, 2023
Time: 1:00-3:00PM
Topic: Open Sharing/Discussion (no guest speaker)