The SMA community celebrated an impactful and advocacy-driven Awareness Month through a number of ways this August. Whether hosting candlelight vigils, meeting with state and local legislatures, holding fundraisers, coordinating MLB awareness games, and more, the community worked together to raise the general publics awareness of SMA.
On August 2nd, members of the community kicked off SMA Awareness Month by meeting with a dozen Senate and House congressional offices to advocate for issues that impact our community. The teams conducting these visits included families affected by SMA, and Cure SMA staff.
One primary goal of these meetings was to advocate for necessary federal funding for newborn screening. Though implementation of newborn screening happens at the state level, the federal government also plays a key role.
Families in Texas, Illinois, Indiana, Ohio, Maryland and New York also made visits and testified to their state legislatures to advocate for newborn screening.
For additional information and resources on newborn screening, visit our advocacy page.
State and Local Proclamations
Many families and chapter leaders asked their state and/or local government to issue proclamations of SMA Awareness Month in the following states/cities/counties:
- Orlando, FL
- Jacksonville, FL
- Tallahassee, FL
- Pensacola, FL
- Tampa, FL
- Gainesville, FL
- Sarasota County Florida
Candlelight Vigils and Social Media Outreach
At sunset on Saturday, August 12th, the community held candlelight vigils all over the country to remember those who have passed away from SMA, and to honor those living with SMA.
Niagara Falls, the Peach Bridge and the Curtis Hotel in Buffalo, New York were lit purple for the vigil and to bring awareness to SMA – a highlight of Awareness Month, courtesy of Western New York Chapter member, Bailey Walter.
Additionally, our community was vigilant and active on social media channels during SMA Awareness Month, and a few families/individuals shared with us their experiences and point of view as part of Wednesday morning videos.
Cure SMA would like to thank everyone who participated in SMA Awareness Month.
Whether you made an advocacy visit, attended an MLB awareness game, sent in photos or videos, or simply shared messages on social media, we appreciate the community effort to spotlight SMA and look forward to next year.