The idea of the MOG Project was born in November of 2017 by Julia Lefelar and her daughter Kristina because of Julia’s diagnosis of MOGAD and the frightening lack of information about the condition.
The MOG Project was established in December of 2017 when Cynthia Albright, another individual diagnosed with MOGAD, and Amy Ednie, decided to work together to advocate for those with MOGAD. Dr. Michael Levy, Julia’s neurologist, suggested that they join The Transverse Myelitis Association (TMA), now called the Siegel Rare Neuroimmune Association (SRNA). We at SRNA worked with The MOG project to launch MOGAD advocacy as part of our wider efforts to advocate for those with rare neuroimmune disorders. The MOG project has now received registration as a 501(c)(3) non-profit organization.
SRNA looks forward to continuing and expanding our partnership with The MOG Project to make sure the education, advocacy, and research resources we offer meet the needs of the MOGAD disease community. Several members of the MOG Project volunteer their time as SRNA support group leaders with members in the area. The MOG Project also joined us as a community partner at the 2020 RNDS and was available as a resource to our community during this education program. We look forward to expanding and offering more specific resources and support for this community through podcasts, events, and other educational resources. For more information about the MOG Project, read this article about the 2019 SRNA Distinguished Service Award Recipients.
Sandy Siegel, the President of SRNA, remarked, “We are grateful for the partnership with The MOG Project. Our hope is that by working together we can improve the quality of life for those in our community who have MOG Antibody Disease.”
Amy Ednie, President of The MOG Project said, “Over the last 2 years, with the support of SRNA we have co-produced remarkable material for the MOGAD community. We are so pleased to officially become a partner and continue this relationship for the good of a global and growing group of patients and caregivers. In partnership, we can better provide hope for a growing community navigating a new frontier in neuroimmune disorders.”
Julia Lefelar, Executive Director of The MOG Project added, “We have been blessed to be able to work with SRNA and through our common efforts have made significant progress in providing the best information to the MOGAD community. We are thankful for our strong and lasting relationship and are thrilled to continue working with such a caring organization, which can certainly only make our work together better.”