The Phil Smith Neuroscience Institute ALS Clinic & Research Center at Holy Cross Health in Fort Lauderdale, Florida provides focused support for people living with ALS, allowing them to receive care from specialized medical professionals during a single visit.
The National ALS Registry and Biorepository was created back in 2007 to help understand how prevalent ALS is, who is developing ALS, and what the possible causes are. Its mission is also to help support researchers in discovering treatments and cures and in preventing ALS.
After being diagnosed with ALS, many people wonder: “Why did this happen to me?” There is no simple answer to this question because the exact cause of ALS is largely unknown. However, a number of factors, including genetics, environmental exposures, and lifestyle/occupational choices, have been linked to an increased risk of developing the disease.
The ALS journey is difficult, so whether it is family, or friends or community volunteers, finding people who are willing to help, and accepting the help they are able to give, can make all the difference. We had the privilege of sitting down with the Woody family’s “village,” to talk about ALS, how it impacts their everyday life, and their incredible devotion to be a part of the family’s ALS journey. Here’s what they had to say.
The drug development process takes years to complete its many steps and is costly – $1-3 billion dollars – to move a basic research idea all the way through clinical trials and FDA approval. Collaboration is essential. Researchers from all over the world in academia, government, non-profit and industry work together to move along the pathway of drug development as rapidly and efficiently as possible.
We recently talked with Dr. Lauren Laboissonniere from the Ranum lab at the University of Florida to learn about her unique research project focused on the development of novel therapeutics for the treatment of C9orf72 ALS/FTD and related repeat-associated disorders.
The ALS Association and ALS Finding a Cure® have awarded seven new grants worth a total of $2 million over the next three years to support the development of early diagnostics for ALS.
Despite all that ALS has taken from me, I still try to maintain a positive attitude and try to enjoy each day. I have much to be thankful for. Instead of dwelling on things I can no longer do, I try to focus my time and energy on things I can still do.
People with ALS on Tuesday called on the FDA to use its existing authority and the flexibility it promised the ALS community it would use to make experimental drugs that show incremental benefits available as quickly as possible. The comments came in a “We Can’t Wait” Action Meeting with FDA organized by The ALS Association.
Ionis Pharmaceuticals announces pivotal patient trial of antisense therapy following aggressive joint research effort led by the nonprofits The ALS Association and Project ALS.