Looking Back on MOGAD Awareness Month
In April, SRNA brought back MOGAD Awareness Month to raise awareness and support for those affected by MOG antibody disease (MOGAD). MOG antibody disease, or MOGAD, is a recently coined rare neuro-inflammatory disorder that preferentially causes inflammation in the optic nerve but can also cause inflammation in the spinal cord and brain. Throughout the year, we raise awareness to improve diagnosis, treatment options, and quality of life for all those affected by rare neuroimmune disorders. We kicked off MOGAD Awareness Month with an online, international two-day event called MOGAD Together. The event brought together individuals, families, and advocates for two days of education, support, and community. Participants revisited education sessions from the 2022 Pre-RNDS with Dr. Benjamin Greenberg and Dr. Michael Levy about how the nervous and immune systems relate to rare neuroimmune disorders. Live sessions included: a community conversation on finding resources with Julia Lefelar from The MOG Project, a presentation by Teresa James from Alexion AstraZeneca Rare Disease on “Prioritizing You” with a focus on mental health for people diagnosed and their care partners, a community roundtable conversation with Francis Fullon, Scott Tarpey, and Andreas Melitsanopoulos, and a special Ask the Experts: Live session with former SRNA fellow Dr. Elena Grebenciucova of Northwestern University, Feinberg School of Medicine, and Dr. Anastasia Vishnevetsky from Massachusetts General Hospital. Attendees also learned how to manage visual issues, and received an overview of MOGAD, pediatric experiences, and how to build a healthcare team.
Photo courtesy of The Sumaira Foundation
Other SRNA activities in April included ongoing online and in-person support group meetings for those diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, or TM. SRNA’s Rebecca Whitney attended an NMOSD and MOGAD Patient Day in Dallas, Texas that was hosted by The Sumaira Foundation in collaboration with SRNA and Dr. Benjamin Greenberg at UT Southwestern. This one-day event included sessions on clinician perspectives, discussions on managing symptoms, patient perspectives and more. SRNA’s Lydia Dubose visited Atlanta, Georgia, to attend the Guthy-Jackson Charitable Foundation’s regional Patient Day: Together – Atlanta. While in town, she had the chance to connect with local support group leaders Jodi Arminio and Laurie Miller, along with the team at The Shepherd Center. During Together – Atlanta, people diagnosed and their families had the opportunity to connect and find support together, hear from clinicians on topics related to quality of life, and personal stories from community members. At the end of the month, two members of the SRNA team, GG deFiebre and Krissy Dilger, visited Boston, Massachusetts, for the American Academy of Neurology’s Annual Meeting. They met with medical professionals, our industry partners, and attended talks on rare neuroimmune disorders.
In April, we also celebrated and recognized SRNA volunteers as a part of Global Volunteer Month, with a special overview of all of the ways that volunteers are a part of SRNA during Volunteer Appreciation Week. On April 19, volunteers and community members interested in volunteering gathered online for an informal volunteer meet and greet. During the event, people joined from across the globe to share about their experiences: why they wanted to give back, their favorite parts about volunteering, and brainstorming ideas together for how to continue working together to make an impact for the rare neuroimmune disorders community.
At the end of the month, community members from around the world joined SRNA for an online community meetup for our international members. Participants had the opportunity to connect with others who are living outside of the United States, share their interests, and contribute their ideas and perspectives on the unique experiences and needs of the international rare neuroimmune disorders community.
As MOGAD Awareness Month draws to a close, we celebrate the success of the collective efforts made by the rare neuroimmune disorders community to raise awareness and build support for individuals and families affected by the disorder. We hope you will join us as we continue raising awareness for MOGAD and all rare neuroimmune disorders throughout the year. We encourage everyone to join us in this effort and help create a more informed and supportive community for all those impacted by rare neuroimmune disorders. Together, we are stronger.
