Highlights from MOGAD Awareness and Volunteer Appreciation Month
Thank you for joining us for MOGAD Awareness Month! Every April, we come together as a community to amplify voices, share stories, and drive change for those affected by MOGAD. April is also Volunteer Appreciation Month, where we celebrate and thank all the amazing volunteers who help make the SRNA community what it is!
This month, we celebrated MOGAD Awareness Month by focusing on connection, education, and community-powered awareness—because we know that no one should navigate a rare diagnosis alone. We also took some time to show our gratitude for our volunteers—we at SRNA can help so many more people with the support, time, and dedication volunteers give to the rare neuroimmune disorder community. Up ahead, take a look at some of what we accomplished together this April, from hosting a global online meetup to showing the impact of our volunteers and spotlighting community voices. Thank you for joining us!
Celebrating MOGAD Awareness Month
Helping raise awareness of rare neuroimmune disorders is a vital part of what we at SRNA do. Awareness of MOGAD and conditions like it lead to better health outcomes, wider understanding of what rare neuroimmune disorders are and how they operate, and it ensures that people with these diagnoses and their loved ones feel understood and accepted. As more people choose to take part in awareness months and share information about these disorders, the world becomes a more informed and more accepting place. It’s also a wonderful time to celebrate with the community all the steps that have been made, as people like Andreas and John make clear:
“Happy #MOGAD Awareness Month! Thank you SRNA for all that you do for patients like me around the world.” —Andreas Melitsanopoulos
“Three years ago – this week – my symptoms began, which shortly led to a diagnosis for MOGAD. Awareness and understanding is essential – SRNA’s work to educate and advocate for us is truly appreciated. Thank you.” —John Filchak
Global Connections
On April 11th, we hosted our second online community meetup of the year, welcoming those with rare neuroimmune disorders to gather together. We had community members join from three countries to share space, experience, and support. One of the meetup attendees had this to say:
“I saw the community meetup on Facebook and was nervous at first, but quickly felt comfortable enough to share my son’s story. I connected with another single mom on the MOGAD journey and discovered the SRNA website, which has been an incredible resource as I continue learning about my son’s diagnosis. We’re also excited to join the SRNA community at camp this summer!”—Darcy
These meetups are held during each awareness month as a reminder that we are stronger together. Everyone is welcome to join us in May, June, and July as we continue building connections across our community.
The Impact of Our Volunteers
It can be difficult to convey just how massive of an effect our volunteers have had on the community—but the number of people helped last year speaks for itself!
Over 400 community members found connection and strength through SRNA Support Group Meetings facilitated by our volunteers, and 36 individuals were supported through our Peer Connect Program. 9 volunteers attended our annual Quality of Life Family Camp to support families with children with rare neuroimmune disorders. Volunteers also wrote 15 written works for the SRNA blog, sharing helpful information, recent developments, and stories of their own journeys,
Also this month, we invited the SRNA community to join “Path to Purpose: Volunteerism and SRNA”. To highlight the impact of volunteers in the rare neuroimmune disorders community, benefits of choosing to volunteer, and the different paths you can take as a volunteer with SRNA! There were also three events specifically for SRNA volunteers to be able to come together, learn, celebrate, and find community together.
If you are interested in learning how you can contribute and give back as a volunteer, click here to learn more and get involved.
Releasing Issue 1 of the 2025 SRNA Magazine
In April, we released issue 1 of SRNA’s 2025 Magazine, themed on disability and empowerment. Disability can be incredibly difficult to define and to reconcile with, but as magazine editor Landy Thomas puts it, “Through the admittedly-difficult process of acceptance, those with disabilities can create their own definition: a definition that makes them feel empowered.” This issue is packed with helpful information on self-acceptance, finding identity after diagnosis, and how advocacy can ensure the rights and well-being of people with rare neuroimmune disorders.
Spotlighting Community Voices
Each awareness month, we spotlight the voices of those with lived experience. Through blog posts, podcasts, videos, and more, we work to ensure that no one feels alone in their journey.
This month, we shared the story of a young community member named Mailys. Mailys’ mother Noelia, shares, “This disease is very tough and the after-effects mark us all, but we are very fortunate that Mailys is a very brave and cheerful girl. She understands what she is going through, and that makes it easier to bear. It gave me the strength to create an association in Spain to raise awareness and research for her illness and to prevent other children from going through what she did.”
Check out the full blog here.
We also shared Becca’s story, who we showcased during last year’s Power of Community campaign. Her journey illustrates the importance of research, advocacy, and the collective strength of our community. For people newly diagnosed with a rare neuroimmune disorder like MOGAD, she gave this word of advice:
“Take your time to process the new diagnosis and grieve. And when you’re ready, find others in the community to connect with. Having support from people who truly understand and empathize makes coping with MOGAD a lot more manageable. There will still be hard days, but you might grow to appreciate the new perspective that comes with navigating rare disease.”
If you haven’t watched her video already, visit us here to see her story and other community stories we featured during last year’s campaign!
Up next: May is ADEM Awareness Month! Meet others in the rare neuroimmune disorders community at our online community meetup on Thursday, May 15. Also, learn how you can get involved and make an impact this NMOSD Awareness Month here.
