On-Demand Directory 2020

1

Welcome Remarks & Introductions

Speakers  Cynthia Roemer, MSA Coalition Board ChairCyndi Roemer has served as the MSA Coalition Board Chair since 2017. She was her mother’s primary caregiver, and has been an advocate for the multiple system atrophy community since her mother lost...

2020-10-02 Sessions
2

Headline Findings from the Multiple System Atrophy Trust Needs Surveys

CLICK HERE FOR SESSION HANDOUT  Complete Session Survey Presentation of results from MSA Needs Survey undertaken by the MSA Trust Speakers    Andy Barrick, Deputy CEO, MSA Trust UK and Ireland Andy...

2020-10-02 Sessions
3

Physical Therapy Perspectives: A Telehealth Case Study

CLICK HERE FOR SESSION HANDOUT  This lecture will provide information regarding the evolution of the role of Physical Therapy in a time of telehealth. Barriers and benefits of telehealth services will be discussed as well as application...

2020-10-02 Sessions
4

A Mindful Approach to Coping with MSA

Participants will learn: 1- What is mindfulness? 2 - What is stress? 3- Stress reaction 4-  Relaxation response 5 - CBT skills 6 - Suggestions for mindfully coping with chronic illness 7 - Meditation and benefits of meditation 8 - Engage in a mindfulness...

2020-10-02 Sessions
5

Role of Speech-Language Pathologist in the Care of People with MSA

CLICK HERE FOR SESSION HANDOUT   Changes in speech and swallowing function are common in people with MSA. The Speech-Language Pathologist (SLP) is the primary professional focused on the evaluation and management of these disorders. In this...

2020-10-02 Sessions
6

It Takes a Village: Building a Care Team

CLICK HERE FOR SESSION HANDOUT  A description of my personal journey through multiple system atrophy with my husband, and how we built our care team. Guidance on interaction with friends, family and professionals , and links to to many different helpful...

2020-10-02 Sessions
7

Comprehensive Management of Orthostatic Hypotension

CLICK HERE FOR HANDOUT  Complete Session SurveyThis session will go over basic aspects of neurogenic orthostatic hypotension and measures you can take to prevent it's symptoms, both pharmacological and...

2020-10-02 Sessions
8

What You Need to Know About Palliative Care & Hospice Care

CLICK HERE FOR HANDOUT  Complete Session SurveyHospice and palliative care are related, but not identical, approaches to dealing with the quality of life of seriously ill people. This presentation explains their similarities and...

2020-10-02 Sessions
9

Consumer-Based Technology to Support Independence

CLICK HERE FOR HANDOUT  Complete Session Survey Keara and Rachel are both occupational therapists and assistive technology professionals who will discuss various options for assistive technology (both high and low tech) to support independence. The...

2020-10-02 Sessions
10

Welcome Remarks & Medical Panel: Overview, Systems & Trends

CLICK HERE FOR PARKINSON'S HANDOUT  CLICK HERE FOR UROLOGICAL HANDOUT  CLICK HERE FOR MENDLIKMSA HANDOUT  Complete Session Survey 9:00AM - 10:30AM EST Medical Panel: Overview, Systems &...

2020-10-03 Sessions
11

Support Care Panel: Allied Health & Support Services for MSA

CLICK HERE FOR EXERCISE YOUR SPEECH AND VOICE HANDOUTCLICK HERE FOR SWALLOWING STRATEGIES HANDOUTCLICK HERE FOR TAKE CARE OF VOICE HANDOUTCLICK HERE FOR THERAPEUTIC EXERCISE HANDOUTComplete Session SurveySpeech and Swallowing Management in...

2020-10-03 Sessions
12

Research Panel: Selected Research Projects & Clinical Trials in MSA

CLICK HERE FOR NATURAL HISTORY STUDY UPDATE HANDOUTCLICK HERE FOR CLINICAL TRIALS FOR MSA HANDOUTComplete Session SurveyNovel Diagnostic Markers & Status Update on Stem Cells as Treatment Approach to MSA  I will be discussing the need for...

2020-10-03 Sessions

View the recordings from the October 23rd - 24th event!

1

Living with MSA

Click here for Session Handouts   Living with MSA Speakers    Emma Saunders Emma Saunders MSA Nurse Specialist ...

2020-10-23 Sessions 2
2

Neurogenic Orthostatic Hypotension: Diagnosis, Management, and Research

This session aims to define the etiology and clinical presentation of Neurogenic Orthostatic Hypotension. Furthermore it will explore conservative measures as well as available pharmacological interventions to treat the symptoms of Neurogenic Orthostatic Hypotension. ...

2020-10-23 Sessions 2
3

Music Therapy and MSA

Click Here for Session Handout  Session Transcript  Music can be a powerful tool in supporting individuals with MSA and their families. In this session, Dr. Wellman will describe music therapy, explain how music therapy may impact those with...

2020-10-23 Sessions 2
4

It Takes a Village

A description of my personal journey through multiple system atrophy with my husband, and how we built our care team. Guidance on interaction with friends, family and professionals , and links to to many different helpful resources.Speakers  Carol...

2020-10-23 Sessions 2
5

MSA Brain Donation: The value to you, your family, researchers, and the future

Click here for Session Handout  Session Handout  Session Handout  Session Handout  MSA Brain Donation: The value to you, your family, researchers, and the futureSpeakers  Robin RiddleRobin learned about...

2020-10-23 Sessions 2
6

The Third Leg of the Stool: The importance of spirituality on the MSA Journey

Explanation of the importance of spiritual health, as part of a trio with physical and emotional health, when facing difficult illnesses.Speakers  Allyson MayeuxI am a member of the MSA Coalition Board of Directors and practice general internal medicine...

2020-10-23 Sessions 2
7

MSA: The Gut-Brain Axis and Nutrition

A discussion of the gut-brain axis and how it relates to MSA, current research related to the gut microbiome, and nutrition considerations and recommendations for people with MSASpeakers  Matt BekeMatthew Beke is a Clinical Dietitian working at the Normal...

2020-10-23 Sessions 2
8

Biohaven: Understanding Potential Treatments and Clinical Trials

Click here for Session Handouts  The session will describe the clinical trial process, clinical trials for medications in trial for MSA, and how an individual with MSA can prepare to participate in a clinical trial....

2020-10-23 Sessions 2
9

Medical Panel

9:30AM  - 12:00PM EST  Medical Panel  Chelimsky Handout 1  Chelimsky Handout 2  Guralnick Handout  Massey Handout  The Movement Disorder(s) of...

2020-10-24 Sessions 2
10

Allied Health & Support Services with Q & A

12:15PM - 1:45PM Allied Health & Support Services with Q & A  Pre-Read: https://chicago.suntimes.com/platform/amp/2020/10/9/21505037/stacy-oliver-obituaryHalbur Handout  Reinhard Handout  Thiel...

2020-10-24 Sessions 2
11

Research Panel

Khurana Handout  2:30 pm - 3:30 pm Research Panel  Research Horizons  SpeakerDaniel Claassen, MD, MS, Vanderbilt University Medical CenterDr. Daniel Claassen is a Neurologist who specializes in the...

2020-10-24 Sessions 2