Looking Back on ADEM Awareness Month!
In May, SRNA brought back ADEM Awareness Month to raise awareness and support for those affected by Acute Disseminated Encephalomyelitis (ADEM). ADEM is a rare inflammatory demyelinating disease of the central nervous system. ADEM is thought to be an autoimmune disorder in which the body’s immune system mistakenly attacks its own brain tissue. It is thought to be triggered by an environmental stimulus (in response to an infection, or much less likely, to a vaccination) in people who are genetically susceptible. 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 ADEM Awareness Month with an online international two-day event called ADEM Together. The event brought together individuals, families, and advocates for ADEM 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 with the Miles For Mason Memorial Foundation, a Community Conversation with The MOG Project, a presentation by Lisa Jones of Alexion AstraZeneca Rare Disease on “Prioritizing You” with a focus on mental health for people diagnosed and their care partners, a Community Roundtable of people diagnosed with ADEM sharing their experiences, and a special Ask the Experts: Live session with Dr. Linda Nguyen, Neuroimmunology Fellow at UT Southwestern Medical Center. Attendees also learned about ADEM and rare neuroimmune disorders, including an overview of ADEM, pediatric experiences, and how to build a healthcare team.
Other SRNA activities in May included online support group meetings for those diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, or TM. Additionally, we held support groups specifically for teens diagnosed with these disorders, a Spanish-language support meeting, and a special session on relationships with our young adults group. There was also an online mindfulness and community chat session led by Nurse Practitioner and bestselling author of “Today Mantras with Megan”, Megan Weigel. Megan discussed the importance of mindfulness and guided participants through a 15-minute mindfulness exercise.
SRNA’s Communication and Engagement Manager, Skye Corken, attended the NORD Living Rare Forum in Washington DC. The forum had a variety of panels and breakout sessions available to attendees including, Rare Disease in Adulthood, How to Participate in Rare Disease Research, and Family Planning and Decision-making.
The SRNA community shared several powerful stories during the month, including two This is Me stories from Sal and Adam. Sal shared his story and encouraged others with ADEM to never give up. In his story, Adam shared “I am thankful and would love to be a resource for people to use for motivation in dealing with ADEM.” Other community members also shared their experiences with ADEM. Tracy described the experience of the invisible effects of ADEM, and the challenges that come when others don’t understand a disability that can’t be seen. Chris, co-founder of the Miles For Mason Memorial Foundation, shared his family’s experience with grief after losing a son to ADEM. These stories highlight the unique experiences and challenges of living with ADEM and the resilience and determination of those affected by it.
SRNA partners and friends also participated in ADEM Awareness Month. SRNA and The MOG Project hosted a live recording of the latest ADEM Academy podcast with guest speaker Farrah J. Mateen, MD, PhD, Associate Professor of Harvard Medical School at the Massachusetts General Hospital. Miles for Mason Memorial Foundation hosted their annual virtual 5k in recognition of #ADEMAwarenessMonth on May 20.
As ADEM 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 as we continue raising awareness for ADEM 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.
