ALS Treat Us Now stands up for current ALS sufferers who want to live. We want today’s ALS patients to have a shot at being the first to overcome their disease. That’s a lofty goal for a population that, since its first identification in 1869, has never once had a treatment known to be effective at stopping or even significantly slowing the disease’s rapid destruction of the human body.
Ambitious? Yes. But it’s a goal we feel represents the purest desire of ALS sufferers and their loved ones: to maximize the chances of finding effective treatment and returning to a full and healthy life.
Unfortunately, bringing near-term treatment options to patients is not a goal that is promoted by all voices in the ALS community. The foundations that are positioned to do the greatest good for patients are instead focused on other things, like funding palliative care and funding long-term research that may only in the distant future translate to effective therapy. These other goals are admirable, but by failing to address today’s patients’ treatment needs they constitute a stinging resignation, a retreat from the battle for those whose lives are on the line right now.
ALS Treat Us Now is the only organization working to improve health outcomes of TODAY’S ALS sufferers by gaining them access to the potentially effective and medically appropriate investigational drugs that exist right now. We believe in turning every stone for treatments that might work at saving those who cannot wait the years it takes for treatments to become fully FDA approved.
We answer to the people who are measuring their lives in months. As a group that started as true patient advocates, we have the organizational courage to ruffle the feathers of those who are uncomfortable with patient-access issues.
We’re not careerists or social workers; we don’t have to answer to celebrated opinion-leaders, and we’re not satisfied with the slow march toward a cure. Nor do we merely cheer from the sidelines. That’s because we’re the ones in the burning house of a quick-killer disease. It’s also because ALS families and those who befriend our cause come from a broader background with more professional range than just those in the narrow ALS research and foundation world. We are lawyers, scientists, teachers, bankers, doctors, and entrepreneurs; we’re also ordinary hard-working people who have the ingenuity and perseverance to tackle problems that others have failed at. We don’t accept the status quo, because we can do better.
As is the case with AIDS, humankind may no sooner find the ultimate cure for ALS as it will discover life on Mars. In the meantime, current patients’ emergency need for near term treatment options must be kept in the spotlight.
