Highlights from AFM Awareness Month
Thank you for joining us for AFM Awareness Month! Every July, we come together as a community to amplify voices, share stories, and drive change for those affected by AFM.
This month, we celebrated AFM Awareness Month by focusing on connection, education, and community-powered awareness—because we know that no one should navigate a rare diagnosis alone.
Up ahead, take a look at some of what we accomplished together this July, from celebrating AFM Awareness Month to hosting our annual Quality of Life Family Camp to spotlighting community voices. Thank you for joining us!
Celebrating AFM Awareness Month
Helping raise awareness of rare neuroimmune disorders is a vital part of what we at SRNA do. Raising awareness of AFM and conditions like it leads to better health outcomes, widens understanding of what rare neuroimmune disorders are and how they operate, and 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.
There are also so many great ways to celebrate awareness months, like our community meet-ups, which was held July 18th in celebration of AFM Awareness Month. These meetups are held during each awareness month as a reminder that we are stronger together.
Everyone is welcome to join us during next year’s awareness months meet-ups. We hope to continue building connections across our community for years to come!
SRNA’s 2025 Quality of Life Family Camp
We held our annual Quality of Life Family Camp this month from June 29th to July 3rd.
This camp is an amazing opportunity to bring the community together—campers with rare neuroimmune disorders, their families, as well as volunteers of all ages eating together, playing together, and enjoying time among other people who truly understand the difficulties and challenges of navigating life with a rare neuroimmune disorder.
This was our 3rd year hosting this event at Morgan’s Camp, an all-accessible facility where things like rock climbing, ziplining, and horseback riding are adapted to fit each child’s level of ability.
A huge thank you to the wonderful staff at Morgan’s and all the volunteers who helped make camp happen!
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 Sarah Mendenhall’s story. Sarah had just begun senior year of high school when she was impacted by the first symptoms of AFM.
She had this to say about her experience with AFM:
“To say it’s been a journey is an understatement. I have fought some low lows but have also enjoyed so many high highs. While I never want someone to face what I have been through, AFM has allowed me to see so many things in life that I wouldn’t have experienced otherwise. It’s taught perseverance, patience, determination, and to truly appreciate the little things in life, especially from a mobility standpoint.”
We also shared Francisco’s story, who we showcased during last year’s Power of Community campaign. His journey highlights the challenges faced by young children diagnosed with these conditions and their families, and the profound impact of early diagnosis and community support. Francisco’s courage and the strength of his family exemplify the heart of our community. For people newly diagnosed with a rare neuroimmune disorder, his family gave this word of advice:
“I always tell Francisco, ‘Feel the feelings, be mad, be sad, be angry, but do not stay in those feelings long.’ ‘Do not let your brain destroy your heart.’ The brain is powerful and if you let the dark thoughts take over, it will overpower your will to come out of it. There is life outside of the acute phase, you survived! and again, if you can find the right tools for you (for your body), take them and use them. It also takes a village; find the right team and community to help you through the journey. We all need help from time to time. It’s ok to take the help.”
If you haven’t watched his video already, visit us here to see his story and other community stories we featured during last year’s campaign!
