Looking Back on AFM Awareness Month!
In July, SRNA brought back AFM Awareness Month to raise awareness and support for those affected by Acute Flaccid Myelitis (AFM). AFM is a type of inflammation in the spinal cord that has specific clinical and MRI features. AFM abnormalities noted on MRI are predominantly found in the grey matter (lower motor neuron) of the spinal cord. In 2012, an outbreak of AFM occurred in California, and more cases were reported in the summer and fall every other year (2014, 2016, and 2018) across the United States. The expected biennial increase of enterovirus D68 and subsequent AFM cases for 2020 did not occur and can likely be attributed to personal protection and prevention measures in place due to the COVID-19 pandemic. While some models predicted a spike of enterovirus circulation and therefore AFM, we did not see a spike in cases in 2021. More information about AFM can be found on the SRNA website.
Throughout the year, we raise awareness to improve diagnosis, treatment options, and quality of life for all those affected by rare neuroimmune disorders. At the beginning of the month, the SRNA community came together in San Antonio, Texas for the 2023 SRNA Annual Quality of Life Family Camp. Families came out for four days of fun: morning jams with the Morgan’s Wonderland Camp staff, taking on the challenge course, learning during education sessions, riding horses, beating the heat at the pool, and many more. New friendships were formed as SRNA volunteers, staff, and families enjoyed the fully accessible camp.
Later, we recognized AFM Awareness Month with an online international event called AFM Together. The event brought together individuals, families, and advocates for AFM for a full day 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 Roundtable including Sarah Mendenhall and Rachel Scott sharing their experiences as a person diagnosed and as a parent of someone with AFM, a presentation from Alexion AstraZeneca Rare Disease on “Prioritizing You” for care partners, and a special Ask the Experts: Q&A session with Dr. Gombolay and Dr. Sadowsky. Attendees also learned about AFM and rare neuroimmune disorders, including an overview of AFM, pediatric experiences, and how to build a healthcare team.
Finally, many community members shared their stories for AFM Awareness Month:
“After those two weeks, I was transferred to the inpatient rehabilitation floor at CHLA. I spent four weeks learning how to walk again, regaining muscle strength, doing occupational therapy, and focusing on recovery. Recovery was brutal. I felt like my body was betraying me and the fight was against myself. However, each step and goal I reached brought hope and gave me the motivation to keep going. CHLA made a tremendous impact in my experience. I have never felt support like the support CHLA gave my family and myself.”
Read the rest of Leah’s story in the SRNA blog.
“Francisco loves sports, playing with friends, and learning new things. Over the past five years, Francisco and his parents Laura and Robert have been taking on the challenges of living with AFM. Today, Francisco is living an active life in Albuquerque, New Mexico, with the help of his treasured power chair.”
Watch Francisco’s “This is Me” video here.
“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.”
Read Gretchen’s perspective as a parent in the SRNA blog.
These are just a few of the many stories that were shared as a part of our This is Me campaign, the SRNA Blog, and on Facebook, Instagram, Twitter, and LinkedIn.
As AFM 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 AFM 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.
