Driving an automobile is an economic, social, and recreational necessity for most Americans. A privilege most teens seek, driving soon occupies a central role in the lives of most adults. For people with medical problems, such as ALS, conflicts may arise in balancing self-reliant driving privileges and society's need to protect public safety.
Our beloved daughter, Carmen Schentrup, was taken from us on February 14, one of 17 victims of the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla. Her life was cut too short. For the last month, we have tried to make sense of the senseless, and we have grieved with the other families.
The ALS Association is at the forefront of the global research effort to find treatments and a cure for ALS. We believe that innovation and collaboration will be the key to winning this important fight. Only by coming together with others around the world who are experts in their fields will we make significant progress. We know collaboration leads to progress.
It was almost a year ago that I fell in love with Jane Babin’s poetry. Her son, a former student of mine, had given me her book Pearls in the Pond a few months after she had passed away after an eleven year battle with ALS (Lou Gehrig’s disease). I found myself immersed in her poems, lectures, thoughts on life and mortality, and coping with her disease.
Leveraging more than $3 million in support from The ALS Association, researchers from UMass Chan Medical School, the National Institutes of Health and Emory University have developed a cloud-based central repository of genetic data related to ALS and frontotemporal dementia (FTD). ALS Compute compiles data from multiple large-scale initiatives into one easily accessible dataset that is far more powerful than any single dataset alone.
The ALS Association announced today that it has awarded a $620,000 grant to the Packard Center for ALS Research at Johns Hopkins to support the Answer ALS Data Portal. Launched in January this year, the Data Portal provides open access to the world’s most comprehensive collection of ALS data.
Gary Stevens lives with ALS, and has a large Walk team that wants to see the disease cured. His friend Todd is helping Gary battle ALS, just like Gary comforted him when his wife was battling cancer.
The ALS Association endorses the strengthened Accelerating Access to Critical Therapies for ALS Act (ACT) for ALS Act (H.R.8662/ S. 4867) as an important step in bringing promising new treatments to people with ALS as quickly as possible. The bill accelerates the fight against ALS by authorizing $100 million for ALS research and creating the first federal entity explicitly charged with developing treatments for neurodegenerative diseases.
On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.
We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.