https://www.twitch.tv/maimonidesvii
Join <Misfits of Nobility> for their 4th annual Walk Across Eorzea - a FFXIV in-game event celebrating Rare Disease Awareness Month and a charity fundraiser for the Acute Flaccid Myelitis Association! Chris (Maim) and Andi's (Niv's) daughter Lil Stomp was diagnosed with a rare disease called Acute Flaccid Myelitis when she was two. Eight years later, her right arm is still partially paralyzed, but she is one of the lucky ones. Most children who are diagnosed with AFM are fully paralyzed, requiring wheelchairs, feeding tubes, and sometimes breathing tubes. Insurance often does NOT cover this life-saving equipment or therapy treatments or quality of life improvements so many families would benefit from, meaning many families are forced to pay for this support out of pocket.
From the AFMA website:
The effects of AFM are both physically and emotionally challenging. Our Association is a resource for those that are personally affected by AFM. We provide grants to patients and families in need of financial assistance for medical equipment and treatments. Additionally, AFMA provides shared and up-to-date information as it is issued by the CDC and Medical Community. AFMA also works to increase public awareness toward this rising health issue in an effort to promote advocacy for research.
Please feel free to tune in to the walk, chat with us, and help us celebrate Rare Disease Awareness Day!
