When it comes to treating symptoms associated with ALS, people will try a variety of methods to see what will work best for them. Among those options is medical marijuana, or cannabis. Although this can be a controversial treatment method depending on where you live and your outlook on the drug, some people with ALS believe the benefits provided by cannabis makes it easier to live with ALS. Here’s what you should know about cannabis and ALS treatment.*
It is a known fact that frontotemporal degneration (FTD) is connected to ALS and complicates an already difficult diagnosis. In light of World FTD Awareness Week, here are more details on the connection between ALS and FTD. Republished with permission from The Association for Frontotemporal Degeneration (AFD).
The discovery in 2011 that the C9orf72 gene mutation can cause both FTD and amyotrophic lateral sclerosis (ALS) has transformed a long held belief that ALS is ‘purely’ a movement disorder and that FTD is ‘purely’ a cognitive or behavioral form of dementia.
It is now recognized that the C9orf72 gene is the most common gene causing hereditary FTD, ALS and ALS with FTD. We now know that several other genes can also cause both diseases. FTD or frontotemporal degeneration is a progressive brain disease with changes in behavior, personality, and language dysfunction due to loss of nerve cells in the frontal and temporal lobes. ALS is a neurodegenerative disease with loss of upper (located in the brain) and lower (located in the spinal cord) motor neurons that leads to paralysis, dysphagia, dysarthria and eventually respiratory failure.
LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause. It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.
What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure. The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.
The National ALS Registry is used to collect, manage and analyze data about people with ALS. The more people signed into the Registry, the more information researchers have access to in their work toward a cure, treatment, and prevention. When people with ALS include themselves in the National ALS Registry, they’re including themselves in the national effort to end ALS.
Because the Registry is its own unique research project and requires people with ALS to join the Registry directly, here are five things people with ALS should know before enrolling.
By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter
Although I think of my dad often, Father’s Day always brings with it a special pang of sadness. It’s been 25 years now that I have not been able to spend Father’s Day with him — he lost his battle to ALS in September of 1992. As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives. My kids never got the opportunity to know what a great man he was. My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.
Dr. Ghazala Hayat is board certified by the American Board of Psychiatry and Neurology and the American Board of Electrodiagnostic Medicine and has clinical neurophysiology certification by the American Board of Psychiatry and Neurology. She is the director of Neuromuscular Services, Clinical Neurophysiology Fellowship and Clinical Neurophysiology Laboratory and the ALS Certified Center of Excellence at Saint Louis University.
The ALS Association’s global research program, TREAT ALS (Translational Research Advancing Therapies for ALS), has remained at the forefront of ALS research since its inception in 1985. We are the largest private funder of ALS research worldwide, and our efforts have led to some of the most promising and significant advances in ALS research. Our approach is global – the world is our lab – enabling us to fund the top ALS researchers worldwide and ensure that the most promising research continues to be supported. We fund projects across the research pipeline, from basic research through clinical trials, and our support has led to several potential treatments currently in clinical trials. Since the ALS Ice Bucket Challenge in 2014, we have tripled the amount we spend in research every year- from $6 million to over $18 million – and we are committed to maintaining – and even increasing – this level.