SRNA founder and board president Sandy Siegel said it best when he described the importance of including Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM) under one umbrella: “Together we are stronger, because education, support, clinical care, and research are more effective by sharing experiences, knowledge, and the power of numbers.”
For 29 years, we have been bringing together the rare neuroimmune disorders community and raising awareness so that more physicians, individuals, researchers, and others will know about these disorders. SRNA has held an annual symposium since 1999, bringing together people from all around the world to learn about rare neuroimmune disorders biology, cause, symptom management, and the latest in research. Volunteer leaders have been hosting Walk-Run-N-Roll events throughout the United States for the past ten years.
This year, we recognized awareness months for NMOSD, MOGAD, ADEM, TM, and AFM from March through July with our annual awareness campaigns. Social media platforms were utilized for sharing information, resources, and stories and we are grateful for the tremendous support we received from community members who enthusiastically shared with family and friends. We also hosted monthly “Together” events to give community members a chance to connect with one another, share experiences, learn from medical experts, and build momentum for a movement of rare disease advocates.
Highlights from NMOSD Awareness Month in March:
- The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Melanie Flood joined Krissy Dilger of SRNA to talk about her experience with neuromyelitis optica spectrum disorder (NMOSD) with Sjögren’s syndrome.
- During the 2023 NMOSD Together event, Lydia Dubose of SRNA was joined by Dr. Grace Gombolay and former SRNA fellow, Dr. Elena Grebenciucova. The physicians answered the audience’s questions about NMOSD. Another live session was presented by Alexion AstraZeneca Rare Disease called “Prioritizing You”, which included helpful information on mental health and self-care for people diagnosed and their care partners.
- Stories from the SRNA blog: “Well, here we are almost 6 years since being told I have NMOSD…No matter how hard your journey is, there are people out there pushing for you to achieve great things. Whether it is your doctors, family, friends, or even a random stranger: do not give up because there are people who can and will help.” – Sandra Ekas, SRNA community member. Read Sandra’s full story here.
Highlights from MOGAD Awareness Month in April:
- Krissy Dilger of SRNA was joined by Dr. Benjamin Osborne for an “Ask the Expert” podcast on “What to Expect Living with NMOSD and MOGAD Long-Term.”
- During the 2023 MOGAD Together event, Krissy Dilger of SRNA was joined by Dr. Anastasia Vishnevetsky and Dr. Elena Grebenciucova for a Q&A session about myelin oligodendrocyte glycoprotein antibody disease (MOGAD). A session was offered by Alexion AstraZeneca Rare Disease on “Prioritizing You”, a conversation about resources and support with The MOG Project, and the Community Roundtable speakers included Scott Tarpey, Andreas Melitsanopoulos, and Francis Fullon.
- Stories from the SRNA blog: “It developed rapidly over the course of several days and took me completely by surprise. I was terrified I would never get back my functioning or that more impairments would develop. Fortunately, the treatment I received improved my condition greatly. I was able to walk again and use my bladder, and the blurry spot in my eye went away. The tremor reduced significantly. I was very much relieved and happy to go home but not at all prepared for the lasting impact this disease would have on my life.” – Gaia, SRNA community member. Read Gaia’s full story here.
Highlights from ADEM Awareness Month in May:
- During ADEM Together, SRNA members Adam O’Connor, Graeme Mackenzie and Nancy Furlow shared their experiences during the Community Roundtable. Sessions with Miles for Mason Charitable Foundation and The MOG Project brought in other community perspectives, and there was a session from Alexion AstraZeneca Rare Disease on “Prioritizing You” with a focus on mental health for people diagnosed and their care partners. Attendees also brought their questions to Dr. Linda Nguyen during the Ask the Experts Live: Q&A session.
- Krissy Dilger of SRNA and Peter Fontanez from The MOG Project were joined by Dr. Farrah Mateen for the second episode of “ADEM Academy,” an ongoing podcast series about ADEM or acute disseminated encephalomyelitis. This episode is titled “Adult ADEM.”
Highlights from TM Awareness Month in June:
- During TM Together, SRNA members Megan McCartney and Julie Barry joined together with SRNA’s Director of Research and Programs GG deFiebre for the Community Roundtable. A session was offered by Alexion AstraZeneca Rare Disease on “Prioritizing You” with a focus on mental health for people diagnosed and their care partners. Attendees also brought their questions to Dr. Kyle Blackburn and Dr. Jonathan Galli during the Ask the Experts: Q&A session.
- Stories from the SRNA Blog: “Every aspect of my life has been impacted. I see how many people are unaware of what life is like for someone with a chronic illness/disability. Now that I can walk again, I see barriers on a sidewalk which would render mobility in a wheelchair impossible. I see the world with a new perspective, and I hope with more awareness, no one ever has to feel hopelessly alone with their rare neuroimmune condition.” -Laura Murray, SRNA community member. Read Laura’s full story here.
Highlights from AFM Awareness Month in July:
- During AFM Together, SRNA members Sarah Mendenhall and Rachel Scott shared their experiences during the Community Roundtable, and Alexion AstraZeneca Rare Disease presented “Prioritizing You” with a focus on mental health for care partners. Attendees learned from a special Ask the Experts Live: Q&A session with Dr. Grace Gombolay and Dr. Cristina Sadowsky.
- Stories from the SRNA Blog: “Initially, AFM was life-threatening for our (at the time) four-month daughter. In the past three years since diagnosis, I have felt like a nurse, therapist, researcher, insurance specialist, and most importantly, my daughter’s number one advocate. In our most weary moments, giving up has never been an option. We just keep going forward in the best interest of our daughter.” – Gretchen Trimble, SRNA community member and parent of a child with AFM. Read Gretchen’s interview here.
The few distinct differences between the rare neuroimmune disorders are largely overshadowed by the similarities between these disorders. The diagnostic tests, the imaging, the acute treatments that are administered, and the subsequent rehabilitation and long-term treatment strategies that take place for one diagnosis could be nearly identical to another rare neuroimmune diagnosis. Much of what we’ve learned about ADEM, AFM, MOGAD, NMOSD, ON, or TM to date has stemmed from what we’ve studied and known about the other disorders. What we will continue to learn from one will only benefit those with the other rare neuroimmune disorders. When we raise awareness for one, we are advancing understanding for all.
