Tuesday, May 21, 2013

Breaking the isolation; raising awareness for #ALS

Fred Fisher, President and CEO of the ALS Association Golden West Chapter, in a video spreading awareness for ALS
In 2003, I joined the fight against Lou Gehrig’s Disease. During my time as the President and CEO of The ALS Association Golden West Chapter, I have personally seen the devastation that ALS causes. We have lost too many people - wonderful people - to this disease. Now is the time for us to band together. Now is the time to work with one purpose and with one goal. Hear the voices of some of the many people who are committed to creating a world without ALS. They are from different backgrounds and experiences – but all are united with focus and determination to conquer this disease. They are THE ALS NATION. Please share this story to raise awareness and encourage others to join in our efforts. My thanks to Lucia Bogatay, Tracy Carver, Matteo Chiari, Juri Kameda, Catherine Lomen-Hoerth, M.D., Ph.D., Alex Sulyman, Kay and Philip Thomas, Senator Art Torres, and Cameron Ward for sharing their stories and to Patrick McMinn for creating this film. We will never give up. It is only together that we will defeat ALS.
One of the many hard things about being diagnosed with a disease like amyotrophic lateral sclerosis (ALS ) or Lou Gehrig’s disease is the sense of isolation that can all too easily overwhelm someone with the disease. It’s not that most other people don’t care about ALS, it’s that they simply don’t know very much about it. It’s a relatively rare disease – there are only around 300,000 people with ALS in the US, compared to more than 5 million with Alzheimer’s – and there are no effective treatments for it.

May is ALS Awareness Month and the ALS Association is using the occasion to try and break through that relative silence and isolation of the disease, by encouraging people with ALS and their families to tell their stories, to share their experiences with others.

The ALS website features a number of moving stories such as one that features the faces and voices of those involved in the struggle to find a cure – including our own Vice Chair former Sen. Art Torres. There is also a story reminding us how devastating the disease can be, written by Johni Van Winkle, who died within three months of her diagnosis.

Fred Fisher, whose story appears above, is President and CEO of The ALS Association Golden West Chapter. He says:
“It’s critical that people with ALS, and their loved ones, have an opportunity to voice their experiences about dealing with this devastating disease. Hearing their moving and emotional stories helps spread awareness and ultimately engages more people in the fight to find treatments and a cure for Lou Gehrig’s Disease.”
The theme of the campaign is “Speak up now to give hope”. By sharing their stories online you can actually do more than just increase awareness about ALS, you can also help the local chapter of the ALS Association win a state-of-the-art power wheelchair to help people battling the disease. It’s a simple act, but it could have a huge impact on someone in need.

One of my favorite stories of hope is this video from a Dan Desmond, who talked with us about living with ALS. We also talked with Lawrence Goldstein, who is one of the CIRM scientists working toward a new therapy for the disease. (A list of all ALS projects is on our website.) 



K.M.

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