MSU in cooperation with Dick DeLauder along with The Myositis Association (TMA) are honored to establish the Mary Jane DeLauder Memorial Fund.
LINCOLN, DE, UNITED STATES, July 16, 2019 /EINPresswire.com/ — Myositis Support and Understanding (MSU) in cooperation with Dick DeLauder along with The Myositis Association (TMA) are honored to establish 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 sporadic inclusion body myositis (sIBM) 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 the MSU 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 MSU began forming their individual online support groups, MJ was one of the original, and longest-serving, admins, and she was instrumental in helping to create the guidelines that got the 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 myositis 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 Inclusion Body Myositis Patient Video Support Sessions for many months. While MSU was forming the non-profit, MJ was available for advice and questions on how we wanted the organization to function.
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, MSU 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 online later this year.
About Inclusion Body Myositis (IBM)
Sporadic inclusion body myositis (sIBM) is one of a group of rare muscle diseases called inflammatory myopathies and is a progressive muscle disease characterized by muscle inflammation, weakness, and atrophy (muscle wasting). Inclusion body myositis (IBM) is the most common acquired myopathy in those age 50 and older. The symptoms and rate of progression vary heavily from person to person.
Myositis Support and Understanding Association (MSU), founded by myositis patients, was created after identifying a need for more patient-focused programs and services. MSU is an all-volunteer, patient-centered 501(c)(3) nonprofit organization supporting patients and caregivers affected by the Idiopathic Inflammatory Myopathies, myositis, which includes dermatomyositis, polymyositis, immune-mediated necrotizing myopathy, inclusion body myositis, and Antisynthetase syndrome, along with the juvenile forms of dermatomyositis – and polymyositis.
Source: EIN Presswire