learning center
Living with MSA Advisory Group
Mission MSA’s Living with MSA Advisory Group is a specialized team of volunteers providing the essential expertise that shapes the direction of our work. This group of individuals living with an MSA diagnosis and their care partners collaborate with us to ensure that firsthand knowledge remains at the heart of our efforts to advance understanding and support for all those affected by multiple system atrophy.
Hi, my name is Ana and I am from the Republic of Georgia. I came to Chicago in 2023 to pursue a Ph.D. degree in Biomedical Engineering and I am doing my research in brain MRI imaging biomarkers. Little time before that my mom was diagnosed with MSA and our family’s life started to shatter. It’s been impossible to deal with the feelings that come with it and put a meaning to this suffering until I thought of one thing – turning this painful experience into knowledge and become a person I needed when we first learned about this disease. So I decided to take on any opportunity that will help me dial this horrible experience into something meaningful.
My husband has been dealing with MSA symptoms since February of 2010, although he wasn’t diagnosed until December of 2020. I am his caregiver, while also continuing to work full time. We’ve dealt with so many frustrations with doctors who don’t know about MSA. We also struggled with long-term insurance before having a diagnosis, when they tried to say it must all be in my husband’s head. I hope to help advocate for more research for MSA, as well as to work on educating the community about it.
I live in the Midwest with my husband of 30 years, Mike, along with our dog and four quirky cats. I’m a teacher who loves gardening, taking photos, and traveling whenever I get the chance. Our son and daughter are both in their 20s and beginning their own “adulting” adventures out of state. I first became involved with this community in late 2022, after a neurologist suggested MSA might be the cause of Mike’s unusual collection of symptoms that weren’t responding to typical treatments.
I am an MSA patient under 50 years old. My beautiful wife and I have 6 kids ranging from age 20 to 6 years old. I have an M.S. degree and PhD in Marriage and Family Therapy. I saw my last client in September of 2023. I enjoy art and music.
I am a genetic counselor professionally; however, my connection to MSA came in Nov 2023 when my husband was diagnosed with MSA-C. I am his care partner and advocate, as it is difficult for him to navigate this complex disease AND the complicated healthcare system. We live in Tampa, FL.
I am an artist, make-up artist, teacher, mother, grandmother, and care partner to my husband who has MSA C & P. I facilitate a virtual peer to peer care partner support group through missionMSA. I reside in Southern California.
I began my career as a school psychologist and adjunct professor, then shifted into life at home as a dad while focusing on personal growth. Along the way, my wife and I built a life around renovating and renting homes, and I took on various part-time work as we went. In 2023, everything changed when I was diagnosed with MSA. Since then, I have focused on learning how to cope with MSA, advocating for myself and others affected by this disease, and engaging in clinical trials. My sincerest hope is that someday a treatment or cure is possible.
I’m a lawyer, recently retired. My wife began showing signs of parkinsonism in 2018, was diagnosed with MSA in 2023, and is now dealing with advanced symptoms. I’m caring for her at home with a lot of help.
I was diagnosed with MSA in December of 2024. Thus far, my symptoms are relatively mild (in comparison), I’ve likely had MSA since 2021 with my first symtpom being urge incontinence and constipation (whcih I attributed to aging)
I am a wife of 36 years, mother of three wonderful adult children, and now the primary caregiver to my husband, Neil, who was diagnosed with MSA-C in 2020. I have spent over 25 years working in global clinical research, leading clinical operations teams and helping bring new therapies to patients worldwide. Neil’s diagnosis has made my connection to MSA deeply personal and inspired me to join this council, where I hope to ensure that the lived experiences of patients and caregivers inform research, care, and advocacy efforts. Family, resilience, and community are at the center of my life, and I am grateful to connect with others who understand what living with MSA truly means.