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The MSA Coalition Newsletter - July 2022
July 2022 Newsletter

Professor Wolfgang Singer awarded
the Bishop Dr. Karl Golser Foundation Prize

Last month, Professor Wolfgang Singer of the Mayo Clinic, Rochester, Minnesota was awarded the Bishop Golser Award 2022 for his landmark studies of biomarkers and stem cell therapies in multiple system atrophy.

This year, The MSA Coalition sponsored this award given for excellence in atypical parkinsonian research in partnership with the Bishop Dr. Karl Golser Foundation (Italy).

Our Chair-Elect, Pam Bower was an invited guest for this award ceremony, representing The MSA Coalition and MSA community.

Read more about Professor Singer's work along with news coverage of the award ceremony here.

Board of Directors and Staff Meet for Strategic Planning 


At the end of June, MSA Coalition Board Members and Staff met in McLean, VA to discuss the direction of the organization and ways to better support the MSA community.

Thank you to those who were able to fill out the Needs Assessment Survey last month. Your insights were a great resource during this strategic planning session, and we hope to implement your suggestions and address your needs to provide the best support possible to our patients, families, researchers, and medical professionals.
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 featuring Dr. Steven Vernino and his team.

We'll have more updates for you in the coming months! Check out our conference info and session recordings from previous years here.
Patient Perspective:
My Life Trail in Namibia, Africa


The impact of MSA reaches across the globe, and Leon Kotze in Namibia shares his diagnosis story and how he finds solace through his art.

Read Here
Care Partner Corner:
A Tender Death: an Experience with Medical Aid in Dying


Joanne Tubbs Kelly shares her experience assisting her husband with MSA in choosing Death with Dignity in Colorado.

Read More
Travel Guide for MSA Patients and Families
It's officially summer, which means family vacations are on the schedule. Make sure to look at our Travel Guide for MSA Patients and Families before your next trip. A diagnosis of MSA does not mean the end of travel for patients and their families. It is possible, at many stages of MSA, to travel – from adventurous, overseas trips, to close-to-home vacation stays, and everything in between.
Discover Travel Tips Here
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.

Clinical Trial Opportunity: A Study to Evaluate Mesenchymal Stem Cells to Treat MSA

Principal Investigator, Dr. Wolfgang Singer, MD states: "The focus is on early disease, and specifically on patients who are still able to walk unaided. We are actively screening for the study, and anyone interested should contact us at adc.research@mayo.edu. We carefully screen and get back to every patient."

IMPORTANT: Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff via the contacts provided at the clinical trials website: https://www.clinicaltrials.gov/ct2/show/NCT05167721 or 
https://www.mayo.edu/research/clinical-trials/cls-20523723

The AMULET study: A clinical research study for people living with MSA

New Clinical Trial Opportunity: Lundbeck announces a new Phase 2 clinical trial now accepting MSA patients for enrollment. More information can be found at this link. amulet.researchstudytrial.com.

The AMULET study aims to see if a study drug is safe and effective in slowing the disease progression in people living with multiple system atrophy (MSA).

An individual may qualify for the study if they:

  • Are 40 to 75 years of age
  • Have been diagnosed with MSA and it has been less than 5 years from the time of onset of MSA symptoms
  • Have a knowledgeable and reliable caregiver who will be available throughout the study when caregiver input is needed (approximately every three months)
  • Meet additional study criteria

There is no cost to participate in this study. Qualified individuals may receive the study drug free of charge and will not be charged for any study-related procedures. Qualified individuals may also receive the placebo. Any reasonable travel or transportation costs (fuel, bus or railway tickets) will be reimbursed. Food costs will be reimbursed for qualified individuals that travel more than 4 hours to a clinical research study site.

To learn more about the clinical research study and to see if you may qualify, please visit our website at amulet.researchstudytrial.com.
 

Learn More

Next Webinar in series "From Bench to Bedside: The Promise and Hope of MSA Research" - July 13, 2022, 11:00am ET (US)

Join Ariana Pitaro, Carina Peritore and Larry Kellerman as they bring to you the next in the webinar series “From Bench to Bedside: The Promise and Hope of MSA Research.” They will be talking to Dr. Chao Peng about his 2017 Coalition seed grant “Pathological alpha-synuclein in glial cytoplasmic inclusions represent a unique alpha-synuclein strain.”

Register Here

This hour-long webinar/discussion with Dr. Peng will explore such questions as “What is alpha-synuclein?” and more importantly “How does alpha-synuclein contribute to the cause of MSA?” His study led to some extraordinary findings that now help others doing research into the causes and potential treatment for MSA.
  
Here are some questions already generated for our guest:

  • You found the alpha-synuclein that causes MSA was 1000x more potent than the alpha synuclein that causes Parkinson’s Disease. What factors contribute to its potency?
  • Why do therapies used to treat other synucleinopathies (i.e. PD) not work for MSA?
  • Were you able to determine why and how the alpha-synuclein found in glial cytoplasmic inclusions (MSA) are more compact in structure than that found in Lewy bodies (PD and other Parkinsonisms)?

If you have any questions for Dr. Peng send them to info@msacoalition.org.

Upcoming Webinars in Series:
September 21, 2022 - Topic and Speaker TBD
December 14, 2022 - Biomarker Development in MSA with Dr. Roy Freeman

New Diagnostic Criteria for Multiple System Atrophy

The Movement Disorder Society (MDS) Task Force on MSA Criteria Revision 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. Read this short article about the criteria and task force. 

The MDS Taskforce was co-chaired by Dr. Gregor Wenning, MSA Coalition Board Member, and Dr. Horacio Kaufmann 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.

In February, Dr. Gregor Wenning and Dr. Iva Stankovic presented on New MDS criteria for clinical diagnosis of MSA with ERN-RND.

Watch Webinar Recording

UF Study Seeking MSA-P Patients to Participate

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
Seeking Participants for MSA Genetic Study
The Multiple System Atrophy Coalition is working with the Translational Genomics Research Institute (TGen), a nonprofit medical research center, on a research study to better understand the genetic makeup of Multiple System Atrophy. We are seeking patients and their families to donate blood drops and saliva.

Learn More
Help us Reach our Summer Fundraising Goal of $22,000!
Join The MSA Coalition’s fundraising sprint this summer from June 20 - September 1! You can donate to help us hit our goal OR you can start your own fundraiser.
 
Event fundraisers are a great way get your network involved in a fun activity, raise money for The MSA Coalition’s work, and provide information about MSA and the Coalition. 
 
Interested in starting a fundraiser? Create your page here or send us an email about an existing event fundraiser you have supported so we can shout it out in our next newsletter. If you’re not sure how to get started, contact our Director of Development, Elizabeth Turcza.

If your summer is packed with plans and you aren't able to create a fundraiser, you can help us reach our $22,000 Summer Fundraising goal by donating today!
Donate
7th Annual Dan Cavanagh Memorial Event and "Running Over MSA 5K" - July 9th in Illinois

The 7th Annual Dan Cavanagh Memorial Event and "Running Over MSA 5K" will be held on Saturday, July 9 in Chatsworth, IL. Friends and family in the area gather for a day of family fun and a charity 5K walk or run in memory of Dan Cavanagh who passed away from MSA in 2015.

This event and fundraiser is organized by Dan’s family, and each year, a portion of the proceeds are given to The MSA Coalition.

Learn More

Hadley Ferguson: Letting the Big Sky shine in 'New Works'

Hadley Ferguson, MSA patient and former MSA Coalition Patient Representative, was recently featured in the Missoulian for her art. Here recent paintings have captured the vast landscape of Montana on small canvases.

Read 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
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