The Power of Community: Alan’s Story
Meet Alan.
Meet Alan. Alan’s diagnosis of vascular myelopathy in 2020 introduced him to a world of challenges similar to those faced by others with rare neuroimmune disorders. Although his condition is different, Alan found a welcoming and supportive community within SRNA. His story is a beautiful example of our community’s inclusive spirit, offering support to all who face similar struggles, regardless of their diagnosis.
When asked how SRNA impacted Alan’s journey, he shared: “SRNA has been invaluable in my journey dealing with a debilitating myelopathy. It’s a tremendous resource of information dealing with the medical and non-medical consequences of myelopathy and rare neuroimmune disorders. In addition, I have been blessed to both receive and been able to give support on a personal level to others and to have found many new friendships through my participation in SRNA’s Peer Mentor Program, support groups, and the biennial conventions. SRNA engages in a myriad activities that benefit those with rare neuroimmune diseases and other myelopathies. From medical research grants and patient registries to support programs including a “quality of life family camp” for patients and their caregivers, SRNA is the most important resource for those suffering from a rare neuroimmune or similar disorder and the medical professionals and caregivers supporting them.”
Thank you Alan for inviting us into your lives and allowing us to document your story and share it with our community. There has been no better way to celebrate 30 years of SRNA than by spending time with community members like Alan.
As we reflect on the past 30 years, we recognize that SRNA is where we are today because of our community. In honor of our 30th, we are sharing six stories from members of our community who have shaped our collective journey. Their stories highlight the challenges, triumphs, and determination of those living with rare neuroimmune disorders. Through these stories, we are celebrating the resilience, power, and togetherness that define who we are. Visit srna.ngo/poc to check out the next five stories we’ve filmed of members of our community as they release in upcoming weeks.
Hand in hand with these stories, we are excited to announce our 30th Anniversary Matching Campaign. Until the end of 2024, your donation will be doubled across all fundraisers and donations thanks to the generosity of SRNA’s board of directors, who will match every dollar raised up to $200,000. Your gift will directly support our mission to empower, educate, and support those affected by rare neuroimmune disorders. By contributing, you are making it possible for more individuals like Alan to thrive.
