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 think of no better way to honor and remember her than to establish this memorial fund to help IBM patients and caregivers attend the TMA Annual Patient Conference in her name.
Education and support, for patients and caregivers both, was something MJ worked to deliver. This memorial fund will be used to help members with inclusion body myositis (IBM), who are engaged in MSU’s online support communities and require financial assistance, attend the TMA Annual Patient Conference.
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 MSU 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.
Dick DeLauder, MJ’s husband and care partner, is honored to have this memorial fund established in her name. His wish for this fund is that it reflects MJ’s passion for education and patient involvement in the community, and he will match donations made during annual fundraising for this award.
For this first year, we worked closely with TMA to pick a recipient for the 2019 Memorial Fund’s award, which covers all costs for a patient and their caregiver to attend the TMA Annual Conference. The 2020 Mary Jane DeLauder Memorial Fund details will be available at Understandingmyositis.org/mary-jane-delauder-memorial-fund later this year.
MJ, we know you are free of pain and are enjoying your mobility without IBM. We hope we are making you proud!Memorial Fund Details Donate to the Fund education inclusion body myositis myositis caregivers press release