Grant Recipients for a New Parkinson's Program on Narrative Medicine
Dr. David K. Simon, BIDMC Parkinson’s Foundation (PF) Center of Excellence Medical Director, and Lissa Kapust, WellnessWorks Coordinator, were awarded a Community Grant from the PF for a program titled, “In Our Own Words: Creating Connections Through Narrative Medicine.” This is our 11th year being funded with a PF Community Grant. Our grants bring “beyond the pillbox” programs to our patients and create a strong community within our Center of Excellence.
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“In Our Own Words" is a collaboration with Dr. Sneha Mantri, a movement disorders neurologist from Duke University with a master's in Narrative Medicine, to bring people with Parkinson's together for workshops; participants will develop a 55-word story about their illness journey, highlighting their goals/values and emphasizing what matters most to them regarding their medical care. Participants’ stories will be recorded, giving them the opportunity to share their videos with their providers to enhance patient-provider relationships.
The first series of workshops will take place September 9, 16, 23, and 30th from 1-2PM. Additional workshops will be offered in January & March 2025. View the program flyer or sign up today.
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Parkinson's Exercise Classes | |
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Join the Summer Session of WellnessWorks!
Online exercise classes with live instructors to help those with movement disorders live a healthy life; find a class that is right for you and your lifestyle. Summer Session: May 13th - August 11th. Contact zluo1@bidmc.harvard.edu with questions or to inquire about a free trial class!
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Class Offerings:
- Yoga
- Tai Chi
- Self-Care for Care Partners
- Rock Steady Boxing
- Nia® Moving to Heal: A PD Seated Workout
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Parkinson's Networking Groups & Activites | | |
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For and About Women
Looking to build community within a strong group of women? This virtual networking group allows women with PD to share experiences, coping strategies and perspectives. To join our next meeting on Thursday, July 18th at 1:30PM, email zluo1@bidmc.harvard.edu.
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Young People with Parkinson's
Are you 50 years or younger and diagnosed with PD? BIDMC and MGH are collaborating to hold a virtual networking group for young people with Parkinson’s! Our next meeting will occur on Tuesday, July 23rd from 4-5:30PM. View the flyer here and register here.
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PD Golf: Putting and Driving
We are collaborating with “Golf for All”’ to offer golf clinics to people with Parkinson’s at the Leo J. Martin golf course in Weston, MA. Clinics are taught by Bob Beach, PGA and will take place on Sept. 19th, Sept. 26th and Oct. 10th at 10:30AM. The total fee is $75. All levels welcome! View the flyer here and register here.
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Find Your Beat: Drumming for Parkinson's
Don’t miss your chance to register for this in-person skill-building program taking place in the Fall! Over a series of classes, participants will learn about an ancient form of mind-body healing while engaging in an upper body workout. View the flyer here and email zluo1@bidmc.harvard.edu to register.
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Parkinson's Foundation NE Chapter PD Symposium
Dr. David K. Simon presented at the PF New England Chapter PD Symposium in June. The following talks are now on YouTube:
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Recent Advances in Parkinson's Diagnosis and Research by Albert Hung, MD, PhD
- Genetics of Parkinson’s: Clues to Slowing Progression by David K. Simon, MD, PhD
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Welcome, Dr. Juan Altamirano!
Juan Altamirano, a functional neurosurgeon based in Mexico City, is joining Dr. Lan Luo this summer to complete a research project and clinical observership in Movement Disorders. This is being supported by the International Parkinson and Movement Disorder Society-Pan American Section (MDS-PAS) Visiting Trainee Grant. We are excited to have you!
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Observational Studies & Clinical Trials:
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ACTIVATE: A study to evaluate the efficacy, safety, tolerability, pharmacodynamics, and pharmacokinetics of BIA 28-6156 in subjects with PD with a pathogenic variant in the GBA1 gene. Learn more here or contact cullman@bidmc.harvard.edu
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ADROIT: An observational study to gather clinical data on how Abbott DBS systems are being used in the routine clinical practice. Contact hbabcock@bidmc.harvard.edu
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ASCEND: A study testing an investigational drug called CVN424 to see if it may improve symptoms in early Parkinson's. Learn more here or contact hbabcock@bidmc.harvard.edu
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AUDIO-ND: An exploratory study to establish biomarkers for both speech and language deficiencies in neurodegenerative diseases. Contact arussel2@bidmc.harvard.edu
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DBS Repository: A longitudinal assessment of motor and non-motor outcomes following deep brain stimulation for movement disorders. Contact zluo1@bidmc.harvard.edu
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Department of Neurology Biorepository: The Department of Neurology is seeking people with different neurologic disorders to be included in a biobank (collection of samples, such as blood and saliva, to be used for research). Contact neurorepository@bidmc.harvard.edu
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Dystonia Coalition: A biorepository for primary dystonia. Contact hbabcock@bidmc.harvard.edu
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Gait Study: A study for people with STN-DBS to investigate gait impairment. Learn more here
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LUMA: A 146-week early-stage Parkinson’s study of an investigational drug called BIIB122 to see if it may slow the progression of PD. Learn more here or contact hbabcock@bidmc.harvard.edu
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Parkinson's Disease Repository: The PD and Movement Disorders Center is seeking people with Parkinson’s disease or parkinsonism to be included in a research database. We would use this database to follow you over time and allow us to inform you about any relevant research opportunities. For more information, or if you are interested in participating, contact Áine Russell at arussel2@bidmc.harvard.edu
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TOPAZ: Trial of Parkinson’s and Zoledronic Acid is exploring if this reduces the risk of bone fractures in Parkinson’s. No in-person visits required. Sign up here
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wAID-P: Web-based Automated Imaging Differentiation of Parkinsonism study is recruiting participants with Multiple System Atrophy (MSA-p) who are willing to undergo an MRI to test the performance of a web-based software tool. Learn more here
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LUMA: A Phase 2b, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Determine the Efficacy and Safety of BIIB122 in Participants with Parkinson’s Disease
The Parkinson’s Disease and Movement Disorders Center is seeking clinical trial volunteers with early-stage Parkinson’s disease to participate in a study of an investigational drug called BIIB122 to see if it may slow the progression of PD. Patients who enroll in this study must have been diagnosed with PD within the past 2 years. Participants will receive the study drug for up to 146 weeks.
Inclusion Criteria:
-Age 30 to 80
-Have been diagnosed with PD within the past 2 years
-Not currently taking levodopa and certain other PD medications (Exceptions may apply. Contact the study team for further details)
Exclusion Criteria:
-Clinically significant neurological disorder other than PD
-Surgical intervention for PD
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Other inclusion and exclusion criteria apply. For more information, contact Hannah Babcock at 617-667-9890 or hbabcock@bidmc.harvard.edu. | | |
JCC Care Partner Support Group
This care partner support group, led by Lissa Kapust, LICSW, meets virtually on the second/fourth Tuesday of each month from 2-3PM. Contact zluo1@bidmc.harvard.edu for more info.
JCC Wellness & Exercise
Learn about the many wellness programs offered in collaboration with the JCC Greater Boston here.
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Your donations to BIDMC's Parkinson's Disease & Movement Disorders Center help us with leading-edge research and quality-of-life programs for people living with Parkinson’s and other movement disorders. Thank you for your support! | |
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