Marianne passed away on May 2, 2024, from complications of SRP necrotizing myopathy and interstitial lung disease. On the eve of the one-year anniversary of her death, we offer this tribute in recognition of her dedication to TMA and those who lived with these rare diseases.
It’s not often that one meets a person who truly transcends the ordinary, someone whose compassion, wit, and grace leave an indelible mark on the lives of so many whom they meet. Marianne Moyer was such a rare individual, both for those of us who knew her through The Myositis Association and others in the world beyond.
A familiar story
In 1999, Marianne was 50 years old and newly retired from her 30-year career at Bell Atlantic. She had a great new consulting job and was looking forward to spending her retirement giving back, investing her time and talents in a variety of volunteer projects.
But one day, while blow drying her hair, the dryer felt too heavy. Soon she couldn’t even lift the hairbrush, steer the car, ride her bike, or step up on a curb. She had trouble swallowing food and developed a dry cough that wouldn’t go away.
At the time, she was diagnosed with polymyositis, a diagnosis that was later changed to necrotizing myopathy. She spent the better part of a year unable to stand, walk, or care for herself. But she was always grateful for the constant support of her husband John (They celebrated their 50th wedding anniversary one week before she died!) who, like so many care partners, carried her, dressed her, fed her, and pushed her to overcome the challenges of muscles that simply would not work.
Time to give
Once the medications started to work and her symptoms were somewhat controlled, she returned to the work of giving back. She attended her first TMA Annual Patient Conference in 2005 where she met another patient from southwest Florida where she lived. Together Marianne and Barbara Kluding (now also deceased) mapped out a plan to create TMA’s Southwest Florida Keep in Touch (KIT) Support Group. In the 18 years since its founding, this group has become one of the largest, most successful of TMA’s regional support groups. Marianne continued to actively co-lead that group until her death.
“I work hard to help our group’s members know they are not alone in this myositis journey. I want them to know that they too can overcome the obstacles that loom large at the early stages of this disease.”
Marianne Moyer in a TMA patient story for Myositis Awareness Month in 2019
When Marianne met or learned of someone who was living with myositis, she went out of her way to call or write or be in touch with them. She would share tips and resources and contact information for those who lived too far away or couldn’t travel to support group meetings. And long before the pandemic made Zoom a part of everyone’s daily life, the SW FL KIT Support Group started using it regularly to connect with those distant or less able group members.
On a regular basis, she asked TMA staff to send her copies of our educational booklets—Myositis 101 for patients and The Physician’s Guide to Myositis for medical professionals—and handed them out wherever she went.
Marianne’s efforts
Over the years, Marianne has been a nearly unstoppable force in support of TMA’s mission.
- She has twice served on TMA’s Board of Directors, including a two-year term as Chair.
- She was instrumental in making Myositis Awareness Month a reality, providing a full month of time for community awareness programming and projects.
- She twice orchestrated a myositis symposium for physical and occupational therapists in which the experts from the Johns Hopkins Myositis Center in Baltimore came to Sarasota, Florida to teach PTs and OTs about the rehabilitation needs of myositis patients. Those recorded sessions are now available for other PT/OT departments to learn how to care for those with myositis.
- She frequently presented at TMA’s Annual Patient Conference, on topics such as how to successfully lead a TMA support group and how patients can keep track of and organize their medical records.
- She mentored many emerging groups and leaders, strengthening TMA’s support network across the globe.
- She co-founded TMA’s Legacy Society, a special giving opportunity in which individuals can express their commitment to the organization by naming TMA as the beneficiary in their will.
- On a biannual basis, she orchestrated a 24-hour Giving Challenge hosted by the Community Foundation of Sarasota County, with matching funds from The Patterson Foundation in support of TMA.
Honoring Marianne
In recognition of all Marianne has contributed to The Myositis Association, a new Marianne Moyer Myositis Leadership Award has been created to recognize TMA volunteers who, like Marianne, lead the way in our myositis community by helping others live their best lives with myositis.
The inaugural award was presented during the 2024 Heroes in the Fight Awards Celebration on September 6 during TMA’s International Annual Patient Conference in Baltimore. It was presented to one of Marianne’s steadfast coleaders of the SW Florida KIT Support Group, Donna DeFant, and accepted by another of her coleaders, Linda Sabatino. Her husband John was also present to speak on Marianne’s behalf.
We are grateful not only for Marianne’s efforts on behalf of those who live with these devastating rare diseases, but also for the joy and grace she brought to everything she did. We miss her desperately but are thrilled that her legacy lives on in Marianne Moyer Myositis Leader Award.
A version of this tribute appeared in the Fall issue of The Outlook magazine.
My wife has been dealing with myositis for over 2 years what ever help we can give and get will be greatly appreciated it hurts my heart to see my wife from being able to do anything to not be able to dress bathing do her hair and struggles with walking thank you and God bless