The MSA Coalition Newsletter - May 2022
May 2022 Newsletter
Save the Date!
Our Annual Patient & Family Virtual Conference will be
September 29th - October 1st, 2022
Mark your calendars. The 2022 MSA Coalition Patient & Family Conference will take place virtually on September 29th through October 1st. This year, our host medical facility will be UT Southwestern Medical Center in Dallas, Texas.

We'll have more updates for you in the coming months! Check out our conference info and session recordings from previous years here.

Coming Soon! MSA Coalition Needs Assessment Surveys

In the next couple weeks, we will be sending out a needs assessment survey to our community members. The purpose of this survey is to gather information about the needs of the Multiple System Atrophy (MSA) community in order to inform the development of programs, services, and resources.

Two versions of the survey will be dispersed: one for patients and one for care partners. Your feedback is crucial to the work of the Coalition, and we will use these survey results to advise our strategic plan as an organization and provide better information and support for our community.

Keep an eye on your inbox, and we thank you in advance for your input!

New Diagnostic Criteria for Multiple System Atrophy

We're excited to share that after nearly a decade of hard work, the Movement Disorder Society (MDS) Task Force on MSA Criteria Revision has reached an important milestone with its publication of the new Multiple System Atrophy (MSA) diagnostic criteria on April 21, 2022.

Last revised in 2008, the second consensus criteria for the diagnosis of MSA are widely recognized as the reference standard for clinical research but lack sensitivity to diagnose the disease at early stages.

The MDS Taskforce was chaired by Dr. Gregor Wenning, MSA Coalition Board Member, along with over a dozen other team members and consultants from around the world.

We are proud to share that an unrestricted MSA Coalition grant has allowed for open access of this publication as we believe our community members should have full access to the latest information about this disease.

Access the full publication here.

Welcome Lisa Hale MSSW as MSA Coalition's Official Consultant!

Last month, Lisa Hale MSSW joined The MSA Coalition as an official consultant! Her expertise in social work, family services, and neurodevelopmental disability make her an invaluable resource to our MSA community.

Lisa received her Masters of Science in Social Work (MSSW) and Trauma Treatment Certificate in 2015 and, concurrently, was awarded the Vanderbilt University Kennedy Center Leadership Education in Neurodevelopmental Disability (LEND) long-term trainee position.

Lisa joined Dr. Daniel Claassen (MSA Coalition Medical Liaison) in 2016 at the Vanderbilt University Medical Center’s Huntington’s Disease Clinic as an HD Clinical Social Worker and Director of Community Outreach.   
In 2017, The MSA Coalition requested that Lisa facilitate a support group at the Annual Patient & Family Conference in Nashville. She was inspired by the force of energy and enthusiasm radiating from all of those in attendance.

"I am proud to now be a part of this dynamic organization as a consultant, supporting patient, caregiver, and family services. I am excited and look forward to learning and growing with you while supporting you on your MSA journey." 

Cyndi Roemer, Chair of The MSA Coalition shares, "Lisa has worked with The MSA Coalition as an invaluable volunteer for several years, giving talks and facilitating support groups at our conferences, assisting with patient and family needs, and supporting the development of educational materials. Given her expertise in the field as a social worker combined with her dedication to the MSA community, she will be instrumental in expanding our support services for patients and care partners in her new dedicated role with the Coalition. I am thrilled that she has joined our team!"

Welcome Lisa!
Patient Perspective:
Preparing for the Summer Heat

Heat intolerance is a common symptom of MSA due to the body's inability to sweat and regulate its temperature. Here are ways to stay cool this summer!

Learn More
Care Partner Corner:
Bert's Journey with MSA

In her blog, Dorothy shares the story of her husband Bert's journey with being diagnosed with MSA. As a retired police officer in Scotland, Bert began spending his time golfing and playing his favorite Scottish music, but when he noticed he could no longer hold the bow for his fiddle, he knew something was not right.
Read More
Interested in Contributing to The MSA Coalition Blog?
We’re dedicated to sharing a variety of voices and experiences with our MSA community, and we encourage patients, care partners, family members, friends, medical professionals, and any one else affected by MSA to share your story with us.

Submit an interest form and an MSA Coalition staff member will be in touch to help coordinate with you.

Here are some blog guidelines and ideas for your reference.

Alterity Therapeutics Announces Clinical Trial in the UK

Alterity Therapeutics announced that the United Kingdom Medicines & Healthcare products Regulatory Agency (MHRA) has accepted Alterity’s clinical trial authorization request to conduct its Phase 2 clinical trial for ATH434 in Multiple System Atrophy (MSA), a rare and highly debilitating Parkinsonian disorder.

Read Full Release

New UF Study Seeking MSA-P Patients to Participate

It was announced last month that researchers from the University of Florida will begin testing a new artificial intelligence tool that can help distinguish a precise diagnosis between Parkinson's Disease, Multiple System Atrophy Parkinsonian variant (MSA-P), or Progressive Supranuclear Palsy (PSP).

Read Full Release

UF is looking for individuals who have Parkinson’s Disease (PD), Multiple System Atrophy Parkinsonian Type (MSAp), or Progressive Supranuclear Palsy (PSP) to participate in two testing sessions with over 20 testing locations across the U.S. and Canada.

Learn More Details
"From Bench to Bedside: The Promise and Hope of MSA Research" Webinar Recording Now Available!
Last month, we launched the first webinar in our "Bench to Bedside" series which will highlight researchers who applied for and won a grant from the Coalition’s seed grant program.

This first webinar focused on pre-clinical research. Two grants funding research into the link between insulin resistance and MSA were initially awarded in 2015 and 2016. Dr. Erwan Bezard and Dr. Wassilios Meissner share their research and its results and answer questions during this recorded webinar.

Watch Webinar Recording
Welcome Elizabeth Turcza, MSA Coalition's New Director of Fundraising and Sponsorships
The MSA Coalition is excited to have Elizabeth Turcza join its staff as the Director of Fundraising and Sponsorships! In this role, Elizabeth will oversee the Coalition's fundraising efforts, donor relations, and corporate sponsorship outreach that will help fund MSA research and support our community members.

Elizabeth comes to us from the Chicago Council on Global Affairs where she managed a portfolio of 300 donors and prospects, oversaw a 3,000 person membership base, and developed donor programs and communications as their Assistant Director of Individual Giving. 

“I am grateful for the opportunity to contribute to The MSA Coalition’s mission of improving quality of life and building hope for people living with MSA. I look forward to working with and for the dedicated members of the MSA community and bringing a compassionate and focused approach in championing the Coalition’s work.”
Welcome to the team, Elizabeth!
Donate to Miles for MSA!

Miles for MSA is a fundraiser that was started by The Urban Family in 2020 in an effort to raise money for The MSA Coalition, bring awareness to MSA, and bring people together for a fun, challenging, month-long event.

This year, participants will either run 100 miles or bike 300 miles between April 20th and May 21st. Event founder Austin Urban will be doing both! 

The 2022 Miles for MSA Team has over 30 members running and biking all over the country and has a team fundraising goal of $100,000. 

Make a Donation! Help the Miles for MSA fundraising team reach their goal of $100,000. You can make your contribution online here.

Clinical Trials Day is May 20th!

Join ACRP in celebrating Clinical Trials Day, a well-deserved ‘time out’ to recognize the people who conduct clinical trials and to say “thanks” for what they do every day to improve public health.

This day of celebration also provides our community with a unique opportunity to raise awareness of clinical trials – and of clinical research as a career option – among the greater public.

Help raise awareness of clinical research and the profession by sharing photos of yourself with downloadable selfie signs, posters, and more!

Tag ACRP and use #CTD2022 and #clinicaltrialsday in your posts.

Learn More
Who We Are; What We Do
Do you ever wish you had a clear statement of what the MSA Coalition is and does?  Your wish is our command – check it out here!

For assistance and a listening ear,
call: 866-737-5999

Give to The MSA Coalition with your Amazon purchases through the Amazon Smile program.

Learn More
Copyright © 2022 Multiple System Atrophy Coalition, All rights reserved.

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