Cathy Cummings believes someday we’ll see a world free of ALS/MND. She also believes we won’t see that day unless we stay committed to working together—everywhere—to make it happen. "We'll never solve ALS until we include the whole world,” she says. “A strong partnership among all organizations dedicated to fighting ALS can move the needle on finding a cure and in making ALS livable."
As executive director of the International Alliance of ALS/MND Associations, a global community working toward the vision of a world free of ALS/MND, Cummings knows of what she speaks. The International Alliance is an organization of organizations, with members from countries around the world, dedicated to connecting people, breaking down siloes, and making sure efforts aren’t duplicative. And as Cumming notes, there has been a lot of positive momentum on multiple fronts because of this collaborative work.
According to Cummings, The ALS Association has been a critical partner in these efforts, both in the United States and around the world. “Other members of the Alliance recognize the power and impact of (the Association's) global research program,” she says.
The Alliance has been a driving force in ensuring metrics from various parts of the world can be helpful to everyone, everywhere. “We’re looking at the way we measure outcomes from clinical trials and harmonizing those throughout the world,” Cummings says, “so that people from South America, Europe, and Africa are working the same way as Asia and North America.”
An area where collaboration has helped ensure our cultural differences are understood is that of voice preservation and voice banking technology. Cummings points out the Alliance is working to ensure people with ALS can connect and communicate with their loved ones, regardless of where they are, their socioeconomic situation, or the language they speak.
But while spoken languages differ around the world, the language of genetics is universal, and Cummings is encouraged by the work being done by Alliance partners in all communities and all locations to gain a better understanding of ALS/MND and move us closer to early disease detection, treatments, and ultimately a cure.
Yes, there is still much work to be done. But Cummings is heartened by the spirit of collaboration among powerful ALS/MND organizations around the world, each and every day. “Big challenges can lead to bigger breakthroughs,” she says. “The pandemic has opened the door to telemedicine and closer connections, so people with ALS and their families don’t feel alone. The fact that ALS can hit anybody, anywhere—and does—means we have a world united in its determination to stop it.”
To learn more about some of the unique ALS initiatives taking place around the globe, CLICK HERE.