Frustrated with the limited availability of assistive technology devices for his mother, who was diagnosed with ALS, Dexter Ang quit his finance job, partnered with David Cipoletta, an underwater robotic engineer, and set to work developing technologies that could universally, massively, and quickly improve the quality of life for people living with ALS.
For many children and young adults in families with ALS, this is a common refrain; they feel alone and isolated from their peers, especially if they are involved in caring for their loved ones. These young caregivers often help with care tasks, yet have little training or guidance in how to do the specific tasks.
Before the ALS Ice Bucket Challenge, The ALS Association allocated $6 million annually to funding ALS research. After the ALS IBC, the Association has budgeted about $18 million per year to research and has so far committed $84 million to ALS research. From this investment, there has been massive payoff in a significant increase in ALS gene discoveries.
We are joined today by Dr. Stephen Goutman, an associate professor of neurology at the University of Michigan and the director of Michigan Medicine’s ALS Center of Excellence and Multidisciplinary ALS Clinic. The clinic was recently awarded an ALS Association Clinical Management grant to support Dr. Goutman’s important study aimed at improving non-invasive ventilation for people with ALS through the use of custom-printed 3D masks.
Today, we are happy to be joined by Dr. Megan McCain, an assistant professor of Biomedical Engineering and Stem Cell Biology and Regenerative Medicine at the University of Southern California (USC), an ALS researcher who recently received an investigator-initiated starter grant award from The ALS Association. These awards are designed to help bright researchers start their own labs to answer their own innovative questions addressing ALS disease.
Assistive technology can provide a major benefit to people living with ALS and their caregivers. That is why some of the advances we have seen in recent years, thanks to generous donations from the ALS Ice Bucket Challenge and beyond, are so exciting.
Researchers funded by The ALS Association, through donations from the ALS Ice Bucket Challenge, discovered new evidence on the role that mutant TDP-43 plays in development and progression of the disease. This important work sheds light on novel aspects of TDP-43 biology and provides valuable tools to gain insight into early stages of ALS disease progression and could lead to the development of new therapies.
The ALS Association is hosting ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry on July 12 in Washington, D.C., and the entire ALS community is invited. The goal of the workshop will be to provide targeted feedback and information to the Food and Drug Administration (FDA) from people with ALS, caregivers, and stakeholders to inform revisions of the FDA’s Draft Guidance on ALS Drug Development.
Erin Brady Worsham, an award-winning artist based in Nashville who has lived with ALS for more than 24 years, takes her philosophy about life from golf.
In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 14th profile in that series.
“I raise my voice for the people who can’t. Someone I love was affected by ALS, so it affected me as well. I say what I [feel] the people who lost their communication abilities would want to be said,” 13-year-old Sophie Rubin said.