May was a month of heightened awareness of ALS. People shared their incredible stories. Shocking disease statistics and organizational self-promoting facts were designed into attractive infographics. All of us in the ALS space hoped for an increase in social media engagement. How many new Facebook Likes did we get? Who followed us on Twitter? How many opens and clicks did our emails generate?
And while yes, awareness is important—a lot of people learned about the horrible realities of ALS—the current reality did not change. During the month of May, people still died because of ALS. Our communities lost parents, siblings, aunts and uncles. We lost friends and partners. We lost co-workers. We lost teachers, CEOs, artists, and athletes.
A heightened awareness did nothing to stop the loss of life.
In May, ALS diagnoses were handed out daily, hundreds of people lost different abilities, breathing became harder for hundreds more. Individuals and families were deeply impacted. ALS didn’t care about social media traffic and web analytics. ALS continued to terrorize.
Yes, a heightened awareness of ALS is a good thing. It means that more people will help change what the future looks like for people living with ALS. But change needs to happen now. And fast. We need access to the express lane, instead of being stuck in bumper-to-bumper traffic at the toll booth. While by its very nature, scientific progress can be slow, the pace of that progress can increase, when dollars are pumped into the research.
At ALS TDI, we are working 24/7 to change the course of this disease, but we all want the pace to pick up. We need money to move faster. We need money to make a bigger impact. We need money to fund the work that will get treatments into humans. We need to take the death sentence away from ALS.