ALS and the Media.

If you're not affected by ALS in some way, you're mostly likely NOT GOING TO KNOW that May is National ALS Awareness Month. Some states have not yet had their Governor's declare May ALS Awareness Month. More recently, Oregon's Governor finally did. Florida is covered, as well as New York, Alaska, and North Dakota. Is YOUR state recognizing May as ALS AWARENESS MONTH? And if so, how is your state promoting awareness? Do you ever hear of ALS on the radio during May? Do you see commercials promoting ALS awareness on your local news stations? Did you know that raising awareness (spreading the word) is our only means of securing funds in hopes of finding a cure and a treatment for this orphan disease? To start with, I have emailed several media representatives in my home state. I have also tried to email Oprah, Ellen DeGeneres, Hugh Jackman, and some of our larger media networks like NBC New York. You can do this too, by visiting Congress.org. Start by asking them if they know that May is National ALS Awareness Day. Ask your local radio and tv stations if they can promote awareness for ALS. Every voice counts, we all add up to a multitude of voices.

Sarah's Story

30 January 2009 NEWS RELEASE

‘Sarah’s Story’ conveys the shocking reality of a Motor Neurone Disease diagnosis. (Also known as ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease.) The first ever UK broadcast advert created to raise awareness of motor neurone disease (MND) has been launched by the MND Association. ‘Sarah’s Story’ is the Association’s new awareness-raising campaign of the same name which will roll out during 2009. The advert is currently being shown at over 50 independent cinemas across England and Wales. The hard-hitting advert features Sarah Ezekiel who is living with MND and after whom the campaign has been named. It is intended to convey the emotional and physical impact of receiving a diagnosis of this devastating, fatal disease. The 90-second film tells the story of a young woman who is suddenly ‘attacked’ by MND. An actress plays the part of Sarah and as her body deteriorates, illustrating the muscle-wasting effects of MND, the actress’s head is superimposed on the body of Sarah Ezekiel. This is the first time the MND Association has produced a broadcast advert to raise awareness of this fatal, neurodegenerative disease which has relatively low recognition among the general public. Its hard-hitting style is likely to shock some audiences. The aim is to stimulate viewers’ curiosity to find out how they can help the charity fight back against MND. Sarah Ezekiel, from north-west London, was diagnosed with MND in April 2000. As the disease has progressed, she has lost the use of her limbs and the power of her speech. “I was 34 and seven months pregnant with my second child when I was diagnosed. I felt absolutely terrified. I can really identify with the film. For me it’s a true reflection of how it feels to get MND as well as reflecting the physical deterioration it has caused to my body. The film is shocking but MND is shocking. I agreed to be involved because I really feel the public needs to know about MND. I didn’t know anything about the disease when I was diagnosed and neither did my family and friends. I believe that if more people are aware of MND and its devastating effects then we will be nearer to finding a cure.” The film which has received a 15 certificate (PG-15) has been created at virtually no cost to the MND Association, with free support from within the advertising and film industries. The charity is hoping that audiences will respond positively to the campaign by supporting its work in funding research to find a cure and caring for people with MND so that they don’t have to face this devastating disease alone. Kirstine Knox, chief executive of the MND Association, says: “As an organization, we exist to fight for people with MND. We serve people with MND, we push for care and we push for research. We have a responsibility to do this and if we’re not going to do this, then who will? We need to tell the world about MND and 'Sarah’s Story' helps us to do this.” “With Sarah’s Story we didn’t set out to shock,” explains Donna Cresswell, director of communications at the MND Association.“The bottom line is that the progression of MND is shocking and we are bringing this truth in front of people who have no or little knowledge of this dreadful disease. We know that for many of our audience MND is outside their world but for some people it’s a reality.” You can watch the ALS/MND advertisement here: http://www.sarahsstory.org.uk/ For further information and for the making of the film, please visit: http://www.mndassociation.org/

Nobody Knows

ALS is a phenomenon that mutated my great grandmother's genetics. She passed the ugly disease onto her children. My mother and two of her first cousins inherited the gene, and were taken by the disease. ALS ravaged my mother's body, stole two years worth of smiles, the ability to eat her favorite peach pancakes and all the weight from her slight body until she was only 45 pounds. She died as peacefully as she could in her husband's arms, but her battle against ALS was anything but peaceful. Eleven years after my mother's death, I am still battling ALS. Most people I talk to don't even know what ALS is. They don't know that there is no cure, no treatment, no cocktail of miracle pills, no therapy, no government funding for research to even FIND any of that. Nobody knows that ALS is an orphan disease. Nobody knows that it costs an average of $250,000 a year to care for a person with ALS (PALS). Nobody knows that military Veterans have a 60% greater chance of developing symptoms of ALS due to exposure to vaccines and other unknown variants. Nobody knows that the government has finally realized their grave error and is now funding Veteran's care. Nobody knows that some family's are forced to suffer loss after loss to ALS because of the mutation in the SOD1 gene and others. Nobody knows that upwards of 500 advocates gather yearly in Washington, DC to raise government awareness of ALS. Nobody knows that the reason we are an orphan disease is for the plain simple fact that ALS does not let us live long enough for our ALS ACCENTS to be heard or counted! Today, I am very excited to hear that my Oregon Governor, Ted Kulongoski, has officially declared May to be ALS AWARENESS DAY. Maybe this will make a difference in the awareness of this 'horrible life stealing without a chance' disease called ALS.