MSA Coalition News, May 2021

MSA Coalition Newsletter - May 2021

Save the Date:
Patient & Family Virtual Conference is October 1 & 2

Mark your calendars. The 2021 MSA Coalition Patient & Family Conference will take place virtually on October 1 and 2. This year, our host medical facility will be the Mayo Clinic in Rochester, Minnesota.

Updates from the MSA Coalition’s Scientific Advisory Board Chairman

Prof. Dr. Gregor K. Wenning, MD, PhD, provides updates on the MSA diagnostic criteria revision, the MSA Coalition Research Program, the International MSA Congress 2021, and clinical trials for MSA patients.

Read the full updates

The SEQUOIA Study Seeking MSA Patients for Research Study
Neurogenic orthostatic hypotension, or nOH, is a condition in which the autonomic system, which controls the involuntary functions of the body, is unable to adequately regulate blood pressure upon standing. nOH is common in people with MSA and can result in dizziness, lightheadedness, feeling faint, or may cause you to black out. If you experience nOH, you may be eligible to participate in Theravance Biopharma's SEQUOIA Study. For more information visit: https://sequoiastudy.com/

Treatment Updates in MSA Pipeline
Many promising treatments are currently in development for MSA. A new update on the testing and funding of new drugs was recently issued:

ATH434 protects brain cells and improves motor function in Parkinsonian disorder

Find out more on our MSA Pipeline Treatment webpage.

May 20 is Clinical Trials Day #CTD2021
Hope. That’s what clinical researchers provide. Every day, they rise to a new challenge and give patients and families hope for a healthier, more promising tomorrow. On Clinical Trials Day, we thank clinical researchers around the world for continuing to rise to the challenge and give us hope. Hope in the battle against multiple system atrophy. Hope in the battle against cancer. Hope in the battle against anything that challenges our pursuit of a better tomorrow.

Find out more about Clinical Trials Day

Springtime Reminder
Cathy Chapman, our Patient Representative on the MSA Coalition Board welcomes Spring and offers a reminder about asking your doctor about over-the-counter allergy medications.

Read Cathy Chapman’s message.

How to Help Your Friends Help You
Most people are well-meaning and truly want to support you through your MSA journey, but many don’t even know where to begin. Give them a chance to help by gently guiding them with suggestions of things they can do. The MSA Coalition has collected some suggestions you can share with friends and family who are looking for ways to let you know they are thinking of you.

Read the suggestions here.

Remembering the “Partner” in Care Partner

So much to do. So much our loved one can’t do. We now do the cooking, the shopping, the planning... and pretty soon, we’re doing it all. We’ve forgotten that we’re a “partner” and there’s another person in this relationship. Elaine Douglas offers some tips on how you can work with your loved one so that they are contributing to the household and the family, even when their abilities are limited. Fostering feelings of purpose and independence can be one of the best things you can do as a care partner.

Read Elaine Douglas's blog.

Recommended Reading:
Unraveling the Mysteries of Sleep Disorders in MSA
Sleep disorders are a common symptom of MSA. Recent research concluded that sleep disorders are associated with MSA-induced damage to certain regions of the brain. The location and distribution of degenerating neurons are different between the two subtypes, with a wider range of brain areas affected in the parkinsonism form. This could explain why patients with the parkinsonism subtype have more sleep disorders.

Read the full article

Personal Story: My Father’s Battle with MSA and My Mission to Help Others
New on the Blog: Carina Peritore shares her personal experience about multiple system atrophy and how her father’s diagnosis changed her career forever. Carina now holds a PhD and has works in neurodegeneration research, where she can continue to honor her father’s memory and help others battling this rare neurodegenerative disease.

Read Carina's blog

MSA Coalition Matching Gift Challenge
The Multiple System Atrophy (MSA) Coalition has received a generous anonymous offer to match donations dollar for dollar up to $25,000. Your support always makes a difference, and now it can have double the impact! Help us build hope for MSA patients and their families by giving to the MSA Coalition

Donate Today - Your Donation will Be Matched!

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!

Call us for assistance and a listening ear: 866-737-5999