Pam will describe the MSA Coalition’s research program highlighting the outcomes of some notable research projects. She will also point out some “not to be missed” research talks coming up on October 1 & 2.
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The MSA Coalition is a global leader in providing educational programs for MSA patients, care partners and healthcare providers. In this presentation, Don Crouse provides an overview of the MSA Coalition’s most important educational programs and explains how to find them on the msacoalition.org website.
In keeping with our traditional practices, the MSA Coalition is offering support group meetings during our virtual conference. Please select the patient or care partner session for your region. This session will be co-facilitated by a peer and a health care professional and will not be recorded. It is an informal meeting space to connect with others, sharing concerns, resources, and coping strategies. The facilitators will help to ensure all voices are heard and to offer their perspectives to support your needs. Note that no medical or professional advise is provided as part of these meetings, as you should always seek this advise through your individual medical professionals.
In keeping with our traditional practices, the MSA Coalition is offering support group meetings during our virtual conference. Please select the patient or care partner session for your region. This session will be co-facilitated by a peer and a health care professional and will not be recorded. It is an informal meeting space to connect with others, sharing concerns, resources, and coping strategies. The facilitators will help to ensure all voices are heard and to offer their perspectives to support your needs. Note that no medical or professional advise is provided as part of these meetings, as you should always seek this advise through your individual medical professionals.
New England (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island,...
In keeping with our traditional practices, the MSA Coalition is offering support group meetings during our virtual conference. Please select the patient or care partner session for your region. This session will be co-facilitated by a peer and a health care professional and will not be recorded. It is an informal meeting space to connect with others, sharing concerns, resources, and coping strategies. The facilitators will help to ensure all voices are heard and to offer their perspectives to support your needs. Note that no medical or professional advise is provided as part of these meetings, as you should always seek this advise through your individual medical professionals.
New England (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island,...
In keeping with our traditional practices, the MSA Coalition is offering support group meetings during our virtual conference. Please select the patient or care partner session for your region. This session will be co-facilitated by a peer and a health care professional and will not be recorded. It is an informal meeting space to connect with others, sharing concerns, resources, and coping strategies. The facilitators will help to ensure all voices are heard and to offer their perspectives to support your needs. Note that no medical or professional advise is provided as part of these meetings, as you should always seek this advise through your individual medical professionals.
Pacific/mountain (Alaska, California, Hawaii, Oregon, Washington, Arizona, Colorado,...
In keeping with our traditional practices, the MSA Coalition is offering support group meetings during our virtual conference. Please select the patient or care partner session for your region. This session will be co-facilitated by a peer and a health care professional and will not be recorded. It is an informal meeting space to connect with others, sharing concerns, resources, and coping strategies. The facilitators will help to ensure all voices are heard and to offer their perspectives to support your needs. Note that no medical or professional advise is provided as part of these meetings, as you should always seek this advise through your individual medical professionals.
Pacific/Mountain (Alaska, California, Hawaii, Oregon, Washington, Arizona, Colorado,...
This session focuses on the power of positive thinking and living your best life with MSA. MSA NJ Board Member, Victoria Pena-Cardinali, a licensed clinical social worker (LCSW) and Julia Landicho, a nursing student and MSA NJ volunteer speak with Barbara and Frank Tinari to discuss their journey with MSA. This inspirational couple speak candidly about how their lives changed since the MSA diagnosis and how they continue to live life to the fullest possible. Following their conversation, other members of the MSA NJ community share snapshots of their stories, thoughts and strategies in support of all those living with MSA.
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This presentation provides an overview of some of the mechanisms leading to the aggregation of alpha-synuclein. Following a description of some of the modifications that alpha-synuclein can undergo, it illustrates with two preclinical examples how these modifications can be targeted in order to counteract the aggregation process and prevent the demise of neurons.
In this talk I will discuss the challenges that health care workers and patients are confronted with and some solutions through a multidisciplinary approach. I will shortly discuss on the challenges in making the diagnosis, a few diagnostic pitfalls, the absence of cure, the consequences in these diagnostic challenges for obtaining support, drug availability (may be more of a problem in some countries than others), challenges in organizing transmural care. I will discuss the organization of a multidisciplinary team, and how health care workers and patients can contribute in quality improvement.
This live session provides the opportunity for Q & A with Dr. Pierre-Olivier Fernagut, ARAMISE and Dr. Patrick Cras, MSA Belgium, subsequent to their on-demand presentations earlier in the program. It is best to view their recordings:
Alpha-synuclein and Disease Mechanisms in MSA
Multidisciplinary Approach for People with MSA
Please come with your questions ready!
Note: This session will provide translation in French.
To provide an overview of the management of different aspects of autonomic failure in MSA. To highlight some of the pitfalls of management. To emphasize the role of multidisciplinary approach of management.
Sleep disturbances are an intrinsic part of MSA. This talk will discuss the diagnosis and management of REM sleep behavior disorder, sleep apnea and stridor in patients with MSA.
Research Panel with Live Q&A
Clinical Research Updates
Daniel Claassen
MSA Coalition Collborative Core Program
Vik Khurana
A Blood Test for Distinguishing between Parkinson’s Disease and Multiple System Atrophy
Gal Bitan
The presentation describes our recent biomarker study in which we found a method for distinguishing between Parkinson’s disease and MSA using a blood test with close to 90% sensitivity and specificity. The rationale, methodology, and implications of the study are discussed.
Live Q&A
Topher and Adrienne, a current and former caregiver of mom’s with MSA share their stories, experiences, insights and lessons learned from being launched into a caregiver role at a younger age. They specifically dive into various aspects of the caregiving role that differentiate younger caregivers from older ones touching on main points that area common thread in the young caregiver community. They also provide resources from young caregivers and welcome you, the young caregiver, to share your story as well!
We will present recommendations for multidisciplinary care for MSA and show how this has been done in other neurologic disorders. Different specialists will discuss their role in caring for patients with MSA.
Introduction & the Neurologist’s Role in an MSA Care team
Rehabilitation Approaches in an MSA Care team
The disciplines of PT/OT and PMR overlap and rely on one another and function as a team to provide nonpharmacologic treatment and management options for individuals with MSA. The information I present today will illustrate our experiences of common patient encounters that happen in our offices and therapy gyms. We know that you are all at different phases of living with this disease, we hope you will find it helpful to be aware of the scope of our practices as a...
Music and Movement with Rhythmic Reminiscence™
Rhythmic Reminiscence™ is a music and movement program developed at Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, NV to help those who find traditional exercise programs challenging to keep moving. Come sing, laugh, move, and have a little fun!
Things to have ready if you can:
For scarves: Towels, scarves, washcloths, etc.
For “flat drums” & tambourines: Paper/plastic plates, Frisbees, mouse pads, etc.
For shakers: Hand weights, canned food, water bottles, etc.
For mallets: Mallets, wooden spoons, whisks, back scratchers, etc.
For “tall drums”: chairs, 5 gallon buckets, etc.
Water
Please join us for inspiration, ideas, and practical tips for traveling with MSA. As we discovered first-hand, it is possible, at many stages of MSA, to travel to a variety of places near and far, from bucket list trips to close-to-home vacation stays. The special time you spend with family and friends and the experiences you have while traveling will provide moments to savor and wonderful memories for all.
Click here for Session Slides
Click here for Sample Letter
Click here for What is MSA Document
Join Margot for Improvisational Theatre Games for people with MSA, Parkinson’s Disease, MS, ALS and their care partners is not just fun but therapeutic. There is evidence based research on the physical, emotional and spiritual benefits of play. Improv classes successful counteract isolation, depression and apathy. In these lively classes, participants get a chance to express themselves verbally or non-verbally through movement and music activities. Games are tailored for people with diverse abilities so everyone can play. These games aid in cognition, motor and memory skills. Participants can play or observe the games-but it’s more fun to play!
MSA Coalition Chair, Cyndi Roemer closes the books on the 2021 Virtual MSA Coalition Patient & Family Conference. Cyndi thanks our sponsors and most of all our community for their trust and support.
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