The Power of Community: Amber’s Story
Meet Amber.
Meet Amber. Amber’s life took an unexpected turn when she was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2012. At 30, she faced numerous challenges but remained steadfast in her determination to understand and manage her condition. Amber’s journey reflects her courage and the essential role of community in providing support and hope during difficult times.
When asked how SRNA impacted her journey, Amber shared: “My involvement with the SRNA has deeply impacted my journey with a rare neuroimmune disorder. SRNA is a patient-centered non-profit organization that truly understands and provides invaluable resources. They offer support, identity, and a sense of family, making the journey less isolating. Their humble and approachable nature, along with the resources they provide, have been so important in helping me navigate this condition and regain a sense of normalcy.
Supporting SRNA is critical because these disorders do not discriminate. NMO can affect anyone, and when it does, it’s overwhelming. SRNA provides a lifeline, offering a place of support and resources that help individuals live normal lives despite their condition. Your donations help keep this vital support system available to those who need it, ensuring that no one has to face this journey alone. Your support can make a profound difference in the lives of those affected by NMO and other rare neuroimmune disorders.”
Thank you, Amber, for inviting us into your life 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 Amber.
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 all five stories we’ve filmed of members of our community.
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 Amber to thrive.
