Tag Archives: ALS

Mito What???

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Mitochondrial Disease: The Most Common Disease You’ve Probably Never Heard of… About 20 years ago, mitochondrial disease was virtually unheard of.  Just 10 years ago, it was considered rare. Today, according to NORD, a disease is considered rare when less than 200,000 people are affected.  Mitochondrial disease is not a single disease, but rather an entire umbrella of rare diseases.  For example, Alpers disease and Barth syndrome are very different and rare forms of mitochondrial Read More >

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ALS Ice Bucket Challenge Brings Attention to the Need For Private Funding

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The ALS Ice Bucket Challenge – the social media phenomenon in which people post videos of themselves dumping buckets of water on their heads – has swept through social media like wildfire as part of an effort to raise both awareness and funding for ALS research. It’s pretty safe to say that it’s working.  As of Thursday morning, the ALS Association had received $41.8 million from existing donors and more than 739,000 new donors over Read More >

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Who Cares About ALS?

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1,100 days. That’s the average amount of time a person survives following a diagnosis of ALS. That is because ALS is a progressive neurodegenerative disorder defined by the loss of both upper and motor neurons which in the clinic is characterized by the atrophy of nearly all a person’s muscles.  These 1,100 days aren’t pretty. Each person will progressively lose their ability to speak, move or eat on their own. Most people will die from Read More >

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ALS Awareness Month: 10 Things You Should Know About ALS

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By Steve Perrin, Ph.D., Chief Executive Officer and CSO, ALS Therapy Development Institute May is a month full of many exciting and celebratory days: college graduations, Mother’s day and Memorial Day.  It is a month typified by excitement, renewal, anticipation and remembrance.  It is also the month in the United States where we recognize all those living with ALS, commonly known as Lou Gehrig’s disease.  If you don’t know someone already living with this currently Read More >

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Stopping ALS: An interview with Dr. Perrin from ALS TDI

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What is ALS? How widespread is the disease? Are there any treatments for ALS? Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease and outside the US as Motor Neuron Disease (MND) or Charcot’s Disease, is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. Dr. Steven Perrin is the CEO, CSO and Vice Chairman of the ALS Therapy Read More >

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