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The MSA Coalition Newsletter - June 2022
June 2022 Newsletter

Take The MSA Coalition Needs Assessment Survey

Last week, we shared our Needs Assessment Survey link with our community to learn more about the experiences, needs, and preferences of those living with MSA today.

There are two surveys: one for patients and one for current care partners that need your input by June 13, 2022 at 11:59 PM CT (US).

It should take less than a half hour to complete, though some may take longer as the survey is comprehensive. If you are not able to fill out the entire survey in one sitting, you can save and return by using the same device and web browser with cookies enabled to pick up where you left off.

Note that some questions require you to scroll to the left or right on your screen and select options for every part of the question before moving forward in the survey. If you have any problems, contact info@multiplesystematrophy.org.

Thank you in advance for your feedback!

Patient Survey
Current Care Partner Survey
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.
Travel Guide for MSA Patients and Families
As we kick-off summer 2022, 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
Patient Perspective:
Sharing My MSA Story


Dan Brooks shares his experience with MSA symptoms and is thankful to family and friends for their support as he fights this disease.

Read Here
Care Partner Corner:
The Biggest Inspiration in My Life: My Mother’s Perseverance Despite MSA


Cassandra Schearer is proud of her mother's perseverence and accomplishments despite MSA.
 
Read 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.

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

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.

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
Become an MSA Coalition Summer Fundraiser
Get involved with MSA Coalition’s fundraising this summer! From June 20-September 1, we’re highlighting event fundraisers from all over that support The MSA Coalition on our social media, website, and in our newsletters. Event fundraisers are a great way get your network involved in a fun activity, while providing information and spreading awareness about MSA and the MSA Coalition’s work.
 
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.
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

2022 Living Rare, Living Stronger Patient and Family Forum Featuring the Rare Impact Awards

June 26, 2022 at the InterContinental Cleveland Conference Center

The 2022 Living Rare, Living Stronger Patient and Family Forum will bring the rare disease community together in Cleveland, Ohio for a day of learning, networking, discussion, and the Rare Impact Awards, presented live at the incredible Rock and Roll Hall of Fame in downtown Cleveland!

The health, safety and comfort of attendees and the rare community are NORD’s number one priority, so please review the event guidelines and check back often for more information and updates from the NORD team.

Register Here

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.

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