Mary Jane DeLauder Memorial Fund
Myositis Support and Understanding (MSU) along with Dick DeLauder is honored to announce the Mary Jane DeLauder Memorial Fund.
Mary Jane Thurmond DeLauder (MJ) of Indialantic, Florida, an advocate for patients all of her life, passed away in June 2019 after living with the rare disease inclusion body myositis (IBM) for 25 years. Her passion for welcoming and educating was well-known throughout the myositis community. That’s why we can’t think of a better way to honor and remember her than to establish this memorial fund to help educate, connect, and support IBM patients and care partners.
Funds will be used to provide one patient and their care partner an all-expenses paid trip to TMA’s Annual Patient Conference We will award the scholarship to someone with IBM who is active in MSU’s support communities and is using their voice to promote education, getting involved in research, and other important advocacy work.
Mary Jane, an avid supporter of IBM patients
MJ was an avid supporter of IBM patients through both organizations, MSU and TMA. Her work on behalf of myositis patients started with TMA, where she served on the board of directors in 2008. She and her husband Dick were great resources to TMA members learning to deal with IBM, where, at the Annual Patient Conference they would join and lead sessions and caregiver panels. MJ was an active member of the SW Florida KIT group. As her disease progressed, she converted to remote participation due to the distance. Her in-person presence and sunny disposition has been missed by the KIT membership.
As MSU began forming our individual online support groups, MJ was one of our original, and longest-serving, admins, and she was instrumental in helping to create the guidelines that got our groups going and kept the family-like, supportive atmosphere so many people have come to know and love.
In her role as administrator of the MSU support groups, MJ was always quick to welcome new members, answer a question, cheer up someone who was down, or share her experiences about adapting to life with IBM. MJ also served as the leader of the MSU IBM Patient Video Support Sessions for many months. While we were forming our non-profit she was available for advice and questions on how we wanted the organization to function. She is sorely missed by all who knew her. We can honestly say MSU would not be what it is today without her presence.
