Directions Spring 2020

Cure SMA Helps Over 2,200 Individuals and Families with COVID-19 Support Programs Family Support Update

Despite the new reality of quarantines, remote working, and social distancing, Cure SMA made sure our work for the SMA community continued. Despite the rapid and unexpected changes, Cure SMA remained vigilant in monitoring and responding to the needs of the SMA community by launching new support programs to help individ- uals and families affected by SMA during the COVID-19 pandemic. From the beginning, Cure SMA was proactive in its response to the COVID-19 pandemic. Our COVID-19 Information Center provided the most up-to-date information and resources in support of the health and advocacy needs of the entire SMA community. From communications about the latest preventative recommendations to template documents for doctors, employers, and schools to letters for state and federal lawmakers protecting the rights of those with SMA, Cure SMA offered unwavering support for the entire SMA community. Then, just weeks into the nation’s quarantine, the COVID-19 Support Package was created to help members of the SMA community obtain essential items that were difficult to locate, such as hand sanitizer and antibacterial wipes.

The packages also included fun items to help keep everyone entertained and engaged as people were asked to isolate at home.

In addition to the Support Package, Cure SMA also launched the COVID-19 Assistance Program, designed to help alleviate some of the financial burden for those in the SMA community who may be experiencing hardships due to the COVID-19 pandemic. This Assistance Program offered individuals and families a $50 gift card to help with purchasing items such as meals, groceries, or other essential supplies during these difficult times. As of May 1, Cure SMA is pleased to have shipped more than 1,420 support packages and provided 820 gift cards to individuals and families affected by SMA to support the SMA community during these unexpected times. At the end of the day, the health, safety, and well-being of the community is always our top priority. Cure SMA thanks our generous donors and sponsors, whose contributions made this effort possible. A special thanks to AveXis, Biogen, Genentech, and Ionis for their additional support of Cure SMA’s new COVID-19 Support Programs.

42 |

DIRECTIONS | SPRING 2020

UPDATES