Meetings

 

Meeting Dates:


Date: Saturday, MAY 18, 2024 - VIRTUAL ZOOM MEETING

Time: 1:00-3:00 PM (Pacific time)

Topic: MAKING CONNECTIONS FOR HEALTH & WELLNESS

Presenter: JAYME JONES, CERTIFIED YOGA INSTRUCTOR

Description: A portion of this meeting may be interactive. 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)