The ALS community lost two incredible people this past Thanksgiving week. Leslie Sands (1951-2020) and Patrick Quinn (1983-2020). Our hearts go out to their families and friends. This is a difficult time for everyone during the economic and emotional hardship of COVID-19. Adding the painful loss of a loved one makes isolation that much more difficult. We will be sending prayers their way.
The statistics behind the fatality of ALS paint an image laden with loss:
Each year in the United States 5,000 people are diagnosed with ALS. This seems like a relatively small number until you start to look at the numbers in terms of the lifelong chances of an individual contracting the disease: 1 in 300.
50% of those 5,000 individuals will live 3-5 years.
25% live 5 years or more and yet another 10% will live more than 10 years.
In the end, ALS is 100% fatal.
Thankfully, over the past 8 years, an increase in disease knowledge has led to slightly longer survival and higher quality of life. This is in part due to the now 4 FDA approved drugs for ALS: Riluzole, Radicava, Tiglutik, and Neudexta. These drugs are a step in the right direction, but they are not enough.
Every time we lose a member of this tight-knit community, everyone feels it. For people working to solve the ALS puzzle, it feels like the weight of a failure, the breathlessness of time running out, and the frustration of not being able to do enough to save that individual. Then, there is the subtle fear over how many people will die before a cure is found and the esoteric contemplation of why ALS exists and why it is so ruthless.
This roller coaster causes MOFF to operate like we are running out of time, because we are. We fund the most cutting edge research, and we grant money to patients to help improve their quality of life in whatever ways current care standards permit. We seek alliances within the ALS nonprofit community that allow us to connect ALS families to the services they need, and we work with ALS collaborations that aim to share ALS information and knowledge. When we lose a person living with ALS, we don’t stop, we keep going.
Clinical research is where we direct people living with ALS who are not satisfied with the current, minimally effective standards of care. Clinical research is what we emphasize will bring about the next effective treatment to ALS, because it will. There are currently 11 Phase 3 clinical trials that are recruiting in the U.S. We encourage all ALS patients that are interested in finding a cure, to participate in one of these trials. If you would like further information on navigating the clinical trial landscape or would like to speak with someone who has gone through the clinical trial experience, please email Natalie Fernandez at firstname.lastname@example.org.