The MOG Project

This is a great event to attend in person for those with rare neuroimmune conditions! We highly recommend it!

Join us for our Inaugural International MOGAD Patient Summit! What a way to bring in #MOGADAwarenessMonth! This virtual event, hosted by #TheMOGProject with Master of Ceremonies, Michael Levy, MD, PhD, is streamed live from San Diego, CA on April 5th, 2025 from 10AM to 4PM PST. You can't miss this full day of MOGAD delivered by experts along with opportunity for Q&A, moderated by MOGAD patients and caregivers! You must register to join: https://bit.ly/IMPS2025 We have some of the most knowledgeable experts in the field internationally providing up-to-date information on diagnosis, disease management and clinical challenges for both adults and pediatrics. Tune in to be the first to hear about our EXCITING announcements! If you can't come, please register anyway to get early access to the recordings! Thanks to our sponsors UCB for their generosity, making this day, a reality! #IMPS2025 #InternationalMOGADPatientSummit #MOGADExperts #MOGAD #MOG #raredisease #rare #rarediseases #chronicillness #neurology #neuroophthalmology #neuroimmunology #rareneuroimmunedisorders #MOGAD #RareDiseaseAwareness #ChronicIllnessSupport #NeurologyCommunity #MOGADPatients #PatientSummit2025

Nowe ?ród?o wiedzy o MOGAD dla naszych polskoj?zycznych pacjentów! Ulotka w j?zyku polskim dost?pna jest na naszej stronie pod tym linkiem: https://lnkd.in/ebU2-6mi Im wi?cej wiesz na temat MOGAD tym wi?ksz? masz moc. #MOGADPolishPatientBrochure #MOGAD #MOG

SAVE THE DATE for a full day of MOGAD Education! We are thrilled to announce our Inaugural International MOGAD Patient Summit on April 5th, 2025 from 10 AM to 4 PM EST! This event will be streamed live from San Diego, California and will include a virtual Q&A experience for attendees through Zoom. Hosted by Michael Levy from Massachusetts General Hospital, you will hear from some of the leading global experts in MOGAD, industry representatives and patients from our MOGAD Community! Don't miss out! Registration details coming soon, so stay tuned! Sponsored by UCB #InternationalMOGADPatientSummit2025 #TheMOGProject #WorldMOGADDay #MOGADAwarenessMonth #MOGAD #MOG #rarediseases #rare #MOGADCommunity #MOGEducation #RareDiseaseAwareness #MOGExperts #PatientSummit #MOGResearch #SanDiegoEvents #UCBBiopharmai

It was an incredible journey to obtaining an ICD 10 code classifying MOGAD as a distinct disease, lead by Jonathan Santoro, MD with the help of Executive Director, Julia Lefelar They were successful after standing up and presenting their case to the CDC in late 2023. Julia also submitted a proposal to the World Health Organization for their ICD 11, which is still in medical review to date. We hope that they follow suit and approve the code classifying MOGAD as a distinct disease. Many thanks to Children's Hospital Los Angeles (CHLA) for this article highlighting our efforts!

Happy New Year to all in the Worldwide MOGAD Community! It has been an exciting year with loads of new studies and information for our MOGAD Patient Community worldwide! We have had a great year expanding our education, advocacy, support and research contributions across the globe and we are happy to report that we are making a difference in patient's lives! We give many thanks to all who participated in our surveys, fundraising activities and support groups! These community activities make a huge impact in bringing MOGAD patients together so that we all can live better lives despite a scary and life-changing MOGAD diagnosis. You all are truly Partners for Progress! We also want to pass along our gratitude for the AMAZING Medical Advisory Council who ensure that our information is accurate and up-to-date. They donate their time and are so generous to MOGAD patients. We truly are blessed! We have some great things to look forward to this year and exciting announcements are coming soon so stay tuned! Here's to a productive 2025 together! #Welcome2025 #MOGAD #MOG #TheMOGProject #MOGADCommunity #LivingWithMOGAD #RareDisease #ChronicIllness #AutoimmuneDisease #PatientAdvocacy #PatientSupport #AdvocacyInAction

This year, our Scientific Advisor, Dr. Lisa Kathleen Ryan and President Amy Ednie attended the American Academy of Neurology Summer Conference (AANSC) in Atlanta, Georgia. They learned a great deal from some of the leaders in clinical and research neuroimmunology about MOG Antibody Disease (MOGAD). Read our Trip Report in our MOG Blog here to get a scientific rundown of the most important lectures: https://lnkd.in/e8UUcDA8 Dr. Ryan summarizes the science as it was presented and much of what she passes along gives us an important look into what it is like to attend one of these conferences. We are grateful to the MOGAD community for supporting us each year so that can send knowledgeable representatives from The MOG Project to these conferences. Because of your support, we are able to provide these trip reports so that you can stay IN THE KNOW about MOGAD!

Our Co-founder and Executive Director Julia Lefelar met with Melanie Flood from Mellie J Foundation tonight as she visited our hometown of Washington DC! She was nominated for the EveryLife Foundation for Rare Diseases 2024 Rare Voice Award and you don’t have to spend much time with her to know exactly why. Her passion and her dedication to finding a cure for blindness, and changing lives of those who suffer from diseases that cause it drove the conversation over dinner. Let’s all congratulate Melanie for her hard work and dedication! We are so excited for what work we can do together. Looking forward to a great 2025! #melliejfoundation????????? #themogproject #blindness #mogad #nmosd #rarediseases #rareautoimmunedisease

We welcome Prof. Dr. Kevin Rostásy, Head of Pediatric Neurology at Children's Hospital, Datteln, Germany to our Medical Advisory Council! As part of our expansion of our global patient-led network, Prof. Dr. Rostásy lends his years of research in MOGAD to our widening expertise of advisors. His research has helped clinicians and other researchers worldwide standardize care for children and adults suffering from MOGAD and we welcome his perspective as we continue to serve patients with educational experience and drive future research. Please read more about Prof. Dr. Rostasy on our website: https://lnkd.in/epKu4SDg Please welcome Prof. Dr. Rostasy to our MOGAD Community! #ProfDrKevinRostasy #ChildrensHospitalDatteln #GermanMedicalAdvisoryCouncil #TheMOGProjectMedicalAdivisoryCouncil #DeutschlandMOGAD #NEMOS #MOGAD #MOG #MedicalRearch #RareDiseases #Rare #neurology #neuroimmunology

Adapting with Becca! https://lnkd.in/ep-bmZZa Adapt-Ability—brought to you by The Guthy-Jackson Charitable Foundation, The MOG Project and SRNA | connect. care. cure. ?—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 Genentech and Amgen. #AdaptAbility #NeuroimmuneCommunity #NMO #MOGAD #RareDisease #ChronicIllness #PatientAdvocacy #HealthEducation #LivingWithChronicIllness #SupportAndResources