The MOG Project

It has been an exciting and fruitful 3 days of learning, connecting and hugging old and new friends at the SRNA | connect. care. cure. ™ RNDS in Dallas, Texas! We were so happy to work with our collaborative partners to connect MOGAD patients to valuable resources and support. Executive Director and Co-founder Julia Lefelar participated in 2 panels: one on Fatigue in Rare Neuroimmune Disorders with Dr. Bardia Nourbakhsh from Johns Hopkins Medicine and another moderated by Leah Campbell with advocacy leaders from The MOG Project, The Guthy-Jackson Charitable Foundation and The Sumaira Foundation. Thanks to the SRNA for their invitation to this fabulous and informative event and Happy 30th Anniversary! #srna #rnds #rareneuroimmunedisorders #MOGAD #MOG #rare #rarediseases #advocacy

Saw so many friends at the SRNA | connect. care. cure. ™ RNDS Symposium!

Adapting with Monica! Adapt-Ability—brought to you by GJCF, The Mog Project, and SRNA—is a collaborative video series designed to improve everyday life for the NMO, MOGAD, and neuroimmune community. Together, we are building a resource to introduce various tools for adapting to life after a rare diagnosis. This program has been provided through an educational grant by Alexion Pharmaceuticals Genentech and Amgen For more Adapt-Ability checkout our Adapt-Ability Playlist on our YouTube Channel and follow us for MOGCasts, special videos and more! https://lnkd.in/ePKR5aTm #AdaptAbility #RareDiseaseAwareness #MOGAD #NMO #NeuroimmuneCommunity #PatientAdvocacy #AdaptiveLiving #ResourceSharing #ChronicIllnessSupport #HealthEducation

Executive Director Julia Lefelar will be at the SRNA | connect. care. cure. ™ RNDS in Dallas later this week. Come meet with members of the MOG Squad at our booth and listen to this panel, moderated by Leah Campbell as well as another on Fatigue in Rare Neuroimmune Conditions, that Julia will moderate with Bardia Nourbakhsh from Johns Hopkins Medicine .

Executive Director Julia Lefelar kicked off our inaugural MOGMates Day one day early in Maryland with amazingly resilient patients all of Dr. Elias Sotirchos of Johns Hopkins Medicine! The Maryland group had a great time and based on that, we know that this is an exciting event spearheaded by our own chief media officer, Jim Broutman! We all had never met each other with the exception of one of our original cofounders, Cynthia Albright. We are all looking forward to this epic event that will happen in many areas globally with patients getting together and finding other MOGAD MATES to have a fun day with: 45 US States 15 Countries 500 MOGAD Patients Thanks to our collaborative partners who got involved as well at The Guthy-Jackson Charitable Foundation and Siegel Rare Neuroimmune Association, the fun was greater than we imagined! #MOGtober6th #MOGAD #TheMOGProject #MOGMates

I am excited and honored to share that Rebecca Salky, Philip Rive, and I will be taking the stage for the Community perspectives panel: Navigating work, travel, setting boundaries, and more, Moderated by Dr. Benjamin Greenberg during the 2024 Rare Neuroimmune Disorders Symposium in Dallas, Texas! We will be discussing our personal journeys and sharing our experiences with rare neuroimmune disorders. The 2024RNDS is a three-day hybrid educational event for those with ADEM, AFM, MOGAD, NMOSD, ON, and TM. If you have not signed up already, consider joining us. Explore the sessions and sign up today at https://srna.ngo/2024-rnds. #WeAreSRNA #2024RNDS

Executive Director and Co-founder Julia Lefelar joined the debate at #ECTRIMS2024 on the role of neurologists when it comes to ensuring holistic brain health for patients in this panel produced by Roche. Dr. Wallace Brownlee from National Hospital for Neurology and Neurosurgery in London, UK, Prof. Iris-Katharina Penner of Inselspital, Bern University Hospital, Bern, Switzerland and Stephanie Ludwig from Roche joined her in this lively discussion which brought this important issue to light for medical professionals treating #MS, #NMOSD and #MOGAD patients globally. #brainhealth #MOG #neurology #neuroimmunology

We had a wonderful time at #ECTRIMS2024! Check out this poster on MOGAD registry mappings by Prof Friendmann Paul and many contributors powered by UCB as well as another on Cannabis use, by Dr. Vishnevetsky & team from The Neuroimmunology Clinic at Mass General Hospital in collaboration with the #MOGSquad! #MOGAD #NMOSD #MS #Copenhagen What a time to be a part of neuroimmunology with Executive Director Julia Lefelar & President Amy Ednie representing our MOGAD patients from The MOG Project So much learning 👁️🧠🧑🏻🔬🧬🔬🥼

ECTRIMS 2024 kicks off tomorrow in Copenhagen, Denmark! On Thursday, September 19th at 16:30, Co-founder and Executive Director, Julia Lefelar, joins the debate on the Industry Theater Exhibition Hall where the panel members speak to the prompt: “Are neurologists the leading or supporting act when it comes to holistic brain health?” The event is produced by Roche. To watch the teaser please follow this link: https://lnkd.in/eAxJN59x #ectrims2024 #neurology #neuroimmunology #mogad #MOG #brainhealth #rochea

INTRODUCING THE #MOGlossary! https://lnkd.in/efyNZX5Q Do you have trouble understanding medical jargon related to MOG Antibody Disease? Does your doctor seem to be talking at you and you find you are absorbing little? WE UNDERSTAND COMPLETELY! We know that as new and even seasoned patients and caregivers, when you learn about MOGAD, with all of the complications, learning medical terms should not add to the difficult task. Especially when you are trying to understand what is happening and are already going through the trauma of a MOGAD diagnosis. The MOGlossary is an online dictionary of medical terminology that provides an easy way to look up those terms you hear from your doctor and others in the community. As our educational materials continue to expand, these terms will be available on our website as on-demand popups when hovering over terms used from the MOGlossary. And with our MOGlossary working group, we will keep expanding the dictionary! Don't see a term that should be in there? Let us know at [email protected]! #MOGMedicalJargon #MOGAD #MOG #RareDiseases #MOGAntibodyDisease #MedicalTerminology #PatientEducation #HealthcareResources #ChronicIllnessSupport #MedicalDictionary