We advocate to connect our members by hosting awareness events, such as our Walk-Run-N-Rolls. We advocate to empower our volunteers by offering training and resources to promote the most accurate information at the local level. We advocate to generate a movement and end rare neuroimmune disorders.
In 2017, we held seven Walk-Run-N-Roll events that, together, raised more than $68,000 from sponsors, donations, and registrations. Not only are these events important fundraisers for us, but they are equally important in bringing our community together.
For many members, our events are the first time they have come face-to-face with another person diagnosed with a rare neuroimmune disorder. It can’t be overstated the importance this has on the emotional side of recovery.
These walks have an impact on the organizers, too. Elisa Holt, Dana Deidloff, and Kara Compton each volunteered to hold a walk because they have a child diagnosed with a rare disorder. Elisa, Dana, Kara, and their families took an active role in the care of their loved ones.
The money raised from their walks goes towards research and the programs we offer, increases awareness of these disorders, and provides invaluable community support. Tina and Jason Robbins advocated for their daughter, Sarah, by hosting the 2017 SRNA Gala Dinner & Auction. Sarah was diagnosed with transverse myelitis in 2011. The event raised more than $52,000 and brought awareness to their Florida community.
In addition to our awareness events, we advocate by collaborating with other organizations to increase the visibility of our cause. SRNA is a member of the National Organization for Rare Disorders (NORD). We participate in NORD’s annual Rare Disease Day, which takes place on the last day of February each year. The main objective of the day is “to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.” In 2017, six of our members, along with their family and friends, went to the Georgia State Capital to educate about and advocate for individuals living with rare neuroimmune disorders.
Finally, we advocate through our ever-growing social media presence. We share articles and photos about those who inspire us with their perseverance; from teenagers like Brittani Rusnak, who was awarded a scholarship for her volunteer efforts at a local hospital, to Virginia Ventura, who is learning the viola 25 years after her diagnosis.
We hope these stories inspire and connect our community. We believe it is important for our members to see that there are others out there volunteering their time to help bring about an end to these disorders.
We can’t do this alone.