Georgia Rare Disease Day
The momentum for Rare Disease Day has begun! Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The Georgia SRNA members gathered on Friday, February 17th, at the Georgia State Capital to educate about and advocate for individuals living with rare neuroimmune disorders. Six people living with transverse myelitis attended this special event, along with their family members and friends. The event featured three speakers who each gave their perspective on the importance of advocating for rare neuroimmune disorders.
The first speaker was Rare Disease Day co-coordinator and SRNA support group leader, Kim Harrison. She told the crowd “It is our hopes and dreams that more funding will help find a cure for transverse myelitis and other rare neurological diseases.”
Butch Brosman, diagnosed with TM when he was six months old, spoke next on the importance of disability rights: “I am thankful to be here today to share my story and I hope it may help others get involved with the notion of disability rights.”
The third speaker, Mathew Hardy, shared his heartfelt experience of caretaking for his dear friend with TM before she passed away: “I am here today as a caretaker and a child’s perspective. What most people don’t understand is that living with someone with a disability is a calling.”
The day concluded with passing out pamphlets and answering questions about rare neuroimmune disorders.
On behalf of us all at SRNA, we extend our gratitude to everyone who helped make this event possible, with special thanks to Kim Harrison, Beth Nguyen, and Jodi Arminio for all of their planning and hard work. Well done, Georgia!
