Friday, June 13, 2014

A Helping Hand in Hope: ALS/MND Association - Benedict Cumberbatch Birthday Fund

"It's a terrifying prospect to have a completely functioning mind inside a body that locks you in, that keeps you stationary." - Benedict Cumberbatch

In 2013,  Vertigo Films released Hawking: A Brief History of Mine,  an authorized documentary about Stephen Hawking, the famous English theoretical physicist and cosmologist. The film opened the doors into Stephen's private life, particularly as it pertained to his personal relationships - and living with a motor neuron disease diagnosis in 1963 that doctors said would end his life within 2 years. The film includes footage of Hawking at home, at work - and navigating his way in the world with humour - considered all the more remarkable given the limits motor neuron disease put on his body - and the pressure placed on his relationships.

This wasn't the first glimpse into the world of Hawking's brilliant mind at work as his body, as far as outsiders could tell, failed him. A 2004 biopic, also entitled Hawking, starred Benedict Cumberbatch as a young Stephen, curious and charming, haughty and humourous - and yes, all too human. Cumberbatch spoke of meeting Hawking and others with the disease trying to find their own way as the MND robbed them of the life they'd always known - and weren't going to forget. Motor neuron diseases ruin the body, but the mind and emotions remain remarkably strong in comparison.

Whenever I hear about motor neuron disease or ALS (amyotrophic lateral sclerosis), the term "Lou Gehrig's Disease" usually follows. Unlike Hawking, baseball legend Lou Gehrig did die two years after his diagnosis. Others with different forms of the disease do live longer, but it is safe to say that Hawking has defied the odds and expectations of many health care providers. When Hawking turned 70 in 2012, Scientific American spoke with Leo McCluskey, an associate professor of neurology and medical director of the ALS Center at the University of Pennsylvania, about motor neuron diseases and just how rare it is for an ALS/MND patient to live with the disease so long. Among the information McCluskey shared:

  • On average people live two to three years after diagnosis.   
  •  Life expectancy turns on two things: the motor neurons running the diaphragm—the breathing muscles. So the common way people die is of respiratory failure. And the other thing is the deterioration of swallowing muscles, and that can lead to malnutrition and dehydration. 
  • Beginning in 2006 it became clear that like a lot of other neurodegenerative diseases, ALS was determined by the accumulation of abnormal proteins in the brain. Ten percent of ALS is genetic and based on a gene mutation.

Although Hawking has lived with a motor neuron disease for decades, he is the exception, NOT the norm. Dying of respiratory failure? Malnutrition? Dehydration? All within an average span of 24 months from diagnosis? It's easy to understand why Benedict Cumberbatch became an ambassador for the Motor Neuron Disease Association, the organization based in Northampton, England, that put Cumberbatch in touch with MND patients before he took on the role of Hawking.

Earlier this year (and likely before that), Cumberbatch encouraged his fans to support their own favorite charities and help others if they wanted to show appreciation for him. While he is grateful for the generosity of fans, he is also a self-described minimalist, and appreciates when fans support each other and those less fortunate on his behalf.

With his 38th birthday approaching this July 19, Benedict Cumberbatch announced support (via his UK talent agency, Conway von Gelder Gant Ltd) for The ALS Association, in partnership with the UK's MND Association, if fans would like to help him celebrate:

If you visit the site mentioned by CVGG, you will read a message from Benedict, as well as information about how your donation will be used. The goal of $5000 USD is within reach, as the current amount raised is $4295.50 USD. Along with your donation, you're also able to write a birthday message for Benedict that will be included in a memory book to be given to the actor.

I live with a chronic illness that impacts my life, but doesn't rob me of my ability to live like most everyone else. The same cannot be said of ALS/MND. Families lose their child, spouse or parent in a manner that seems particularly cruel, especially as mental abilities remain while physical abilities deteriorate. 

If a gift to an organization helps identify the genetic activities that cause motor neuron diseases and helps more families keep loved ones with them longer, it means more birthdays for patients. A future where other ALS/MND patients can celebrate decades of birthdays, much like Stephen Hawking has been able to do, seems a rather nice gift for Benedict, indeed.

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