Press & Media
The MOG Project is a 501(c)3 organization founded in 2018 by Julia Lefelar, Amy Ednie, Kristina Lefelar and Cynthia Albright after Julia and Cynthia were diagnosed. We are devoted to advocating for those diagnosed with MOG Antibody Disease (MOGAD) globally. We raise awareness, provide education, collaborate with researchers, fundraise and provide support for our community in hopes of finding a cure. We offer disease information in the form of easy to understand infographics, written materials and videos, and provide support groups to bring together those who are in need of community experience. We have created a patient-led network, bridging the gap between patients and medical professionals by connecting patients, doctors, researchers and pharma with the purpose of gaining understanding of this new frontier in neuroimmunology.
Print Press
PR Newswire, Eileen Coyne, The MOG Project, Pediatric Neurologist, Secure CDC Approval to adopt ICD-10 Code for Rare Disease MOGAD, October 2, 2023
In ealy October of 2023, a new code for MOGAD was released as part of the ICD-10 platform that is used by the CDC and some other countries outside of the US. This was a huge win by The MOG Project and Dr. Jon Santoro, one of our medical advisors for patients with this rare neuroimmune condition.
Mayo Clinic Laboratories, Robin Huiras-Carlson, Seeking, and Finding Answers, Hope: Joe Mondloch, July 10, 2023
In July of 2023, The Mayo Clinic published this article as part of the month’s Patient Spotlight feature about “how the collaboration between The MOG Project and Mayo Clinic physicians helped one patient access integrated, leading-edge care for the debilitating neurological condition.”
Mayo Clinic Laboratories, Robin Huiras-Carlson, Progressive Alliance Advances Science Through Patient-Powered Research, July 12, 2023
In July of 2023, The Mayo Clinic published this article on our unique relationship with their utoimmune Neurology Laboratory where they diagnose and treat many MOGAD patients each year. This must-read article which is part of their “Eye on Innovation” series, highlights the synergy cultivated between us as advocates and them as clinicians and researchers. In this article you will learn how “Harnessing the power of patients’ lived experiences and their biospecimen data, a unique relationship between a nonprofit patient advocacy group called The MOG Project, a team of Mayo Clinic neurologists, and the Autoimmune Neurology Laboratory at Mayo Clinic has created a synergetic bridge that’s advancing the science behind a devastating neurological illness.”
PR Newswire, Eileen Coyne, The MOG Project, February 15, 2022
In February of 2022, The MOG Project marked Rare Disease Day 2022 with a call for all rare disease patients to participate in patient registries.
Washington Post, Medical Mysteries, Sandra Boodman, January 15, 2022
In December of 2021, Julia Lefelar, Co-Founder and Executive Director of The MOG Project, met with Sandra Boodman, Medical Mysteries columnist at the The Washington Post to learn more about Julia’s long journey to a diagnosis of MOG-AD. Sandra Boodman also talked with Dr. Michael Levy, one of our medical board advisors who made the diagnosis for Julia. The result was the story of a 17-year journey to finding out what was ailing her. This is the story behind the motivation for The MOG Project.
Washington Post
Press Release, November 19, 2021
Read this press release from Kimball Hughes Public Relations on our recent auction, hosted by Unicorn Auctions our of Chicago for a visit and tasting experience to the famous and historic Buffalo Trace Distillery in Frankfort, Kentucky. The winner was able to choose one Blanton’s Single Barrel bourbon whiskey and experience a VIP tour of the historic distillery.
Read the full story here:
Broadcast Radio and Television
Handi-Link, CJAM Radio, Windsor Ontario, Canada, April 29, 2022
Handi-Link, hosted by Cam Wells, is an information program about issues surrounding people with disabilities. Cam interviewed our Executive Director, Julia Lefelar, about the work that she does for The MOG Project.
RNIB Connect Radio, United Kingdom, February 16, 2022
RNIB Connect Radio part of the Royal National Institute of Blind People in the United Kingdom and is Europe’s first radio station broadcasting with the blind and partially sighted listener in mind. They sat down with our Executive Director, Julia Lefelar, for this interview about The MOG Project
NBC4 News, Washington DC, November 26-27, 2021
Being from the Washington DC metropolitan area, The MOG Project was highlighted on the local NBC affiliate, NBC4 DC in order to tell the story of our Rare Whiskey 4 Rare Disease auction of a huge barrel of Blanton’s Whiskey and VIP tour of the historic Buffalo Trace Distillery in Frankfort, Kentucky.
Read about it and watch the two broadcasts in our MOG Blog titled The MOG Project Makes an Appearance on NBC4 Washington DC.
In July of 2023, The Mayo Clinic released this article about the unique relationship that is shared between Mayo Clinic’s Neuroimmunology Laboratory and The MOG Project. This must-read article published by Mayo Clinic as part of their “Eye on Innovation” series, highlights the synergy cultivated by The MOG Project and the Autoimmune Neurology Laboratory at Mayo Clinic:
PR Newswire, Eileen Coyne, The MOG Project, February 15, 2022