Ari Anderson of Charlotte, NC has been a tireless advocate for many years. He has met with reporters and lawmakers to advocate for the importance of proper funding for home care nurses for individuals living with disabilities. He regularly writes a column for SMA News Today, and in honor of Spinal muscular atrophy (SMA) Awareness Month, shares his message of hope. Despite the challenges that Ari faces with mobility, nursing services, and other issues, Ari is not one to let life get him down. He dreams of traveling across the country, and recently learned about Delta Air Lines’ current effort to partner with UK-based Air4All to create airline seats that people can fold up and inward to accommodate a wheelchair restraint.

Read more about Ari’s message on SMA News Today.

About SMA:
Spinal muscular atrophy (SMA) is a rare genetic condition characterized by progressive muscle weakness and atrophy. It mainly affects motor function, but often also causes problems with speaking, swallowing, and breathing—along with other symptoms. SMA is estimated to affect about 1 in every 8,000-10,000 live births, and about 1 in every 50 people is thought to be a carrier for the disease. Carriers are typically healthy individuals who have an SMA-causing mutation and can transmit it to their biological children.

When SMA is diagnosed in young infants, the prognosis is normally fatal. There is currently no cure for SMA, however, in the past decade the advent of new disease-modifying treatments has dramatically altered the prognosis for individuals with SMA. Like many others with SMA, Ari was given a life expectancy of just two years. But he has surpassed that milestone by decades: Ari celebrated his 42nd birthday earlier this year!

Thank you Ari, for using your voice to advocate for the thousands of children and adults living with SMA, and for the many who rely on home care to stay safe where they want to be: At Home!