We are excited to collaborate with The MOG Project to advance our joint goals to support families affected by rare neuroimmune disorders, specifically MOG antibody disease (MOGAD). 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 sought 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 community. We also look forward to expanding and offering more specific resources and support for this community.
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.”
About the Siegel Rare Neuroimmune Association
SRNA was founded 25 years ago by families of loved ones affected by rare neuroimmune disorders. We advocate for, support and educate individuals and their families diagnosed with a spectrum of related rare neuroimmune disorders – acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis. We invest in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. We have over 14,000 members and are active in 111 countries. We offer an up-to-date accurate website, resource library of over 300 publications, a patient registry, “Ask the Expert” podcasts, education symposia, the Myelitis Helpline, Quality of Life Family camps, clinician-scientist training Fellowship and a support group network. SRNA is a registered nonprofit organization recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit organization with a Guidestar Gold Seal of Transparency.
About The MOG Project
The MOG Project was founded 2 years ago because of the lack of accurate and up-to-date information and the inability to connect with others trying to find answers to what can be expected with a diagnosis of MOGAD. The MOG Project was established to connect people in the hopes that no one will ever go without the latest information pertaining to their diagnosis. The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, advancing research through expert collaboration and fundraising, and providing support and advocacy for our community in hopes of finding a cure.