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8/31...ALS Ice Bucket Challenge...on w/the Pres/CEO of ALS...

 
Posted August 30th, 2014 @ 2:32pm


About ALS: 

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a fatal, neurodegenerative disease that attacks nerve cells in the brain and spinal cord. 

         ALS does not discriminate, women and men of all ages and backgrounds are at risk; veterans are diagnosed with ALS twice as often as civilians. 

         People with ALS lose their ability to move, speak, swallow and eventually the ability to breathe, while all five senses continue to function normally.

         The average life expectancy of a person with ALS is two to five years from diagnosis.

         Currently, there is only one drug approved by the U.S. Food and Drug Administration (FDA) to treat ALS, which only modestly extends survival by two to three months. 

         Research shows that access to expert, multi-disciplinary community based and clinic care extends survival between six to ten months.  
 
  “How” the Ice Bucket Challenge started…

·         The challenge became a viral sensation thanks to Pete Frates and his family. Former Boston College baseball captain, Pete Frates is 29 and has lived with ALS since 2012. He and his family have been active fundraisers and advocates for The ALS Association Massachusetts Chapter for a number of years, and testified last year at the FDA hearing to accelerate drug development.    The ALS Association is extremely grateful for the generosity of these donors and for the actions of several people, including Ariana Kennedy, Pat Quinn, Jeanette and Anthony Senerchia and Pete Frates and his family. Their commitment to this cause has inspired the nation.

·         Celebrities and media figures have included: Matt Lauer, Martha Stewart, Jimmy Fallon, Denis Leary, Elizabeth Banks, Justin Timberlake, Larry King, the anchors from GMA, Conan O’Brien and even Ethel Kennedy (who challenged President Obama).  New celebrities include Oprah, Steven Spielberg, and George Takei (former “Sulu” on the original Start Trek!).  Former President George W. Bush has taken the challenge as well.

 

Fundraising Statistics From ALSA National (*July 29 to August 28):

•              If we look at donations Association-wide (which includes national and chapter revenue), our organization has received $98.2 million compared to $2.7 million during the same time period last year (July 29 to August 28).*

•              These donations have come from existing donors and 2.3M new donors to The Association.

About The ALS Association and The Golden West Chapter
The mission of The ALS Association is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.  We are a member of the National Health Council and the only National organization solely dedicated to fighting ALS on all fronts while directly serving the ALS community. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. The Golden West Chapter serves people with ALS and their families in the state of Hawaii and in 31 counties throughout California.

What do we do now?
With only about half of the general public knowledgeable about amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, the Ice Bucket Challenge is an extraordinary virtual educational event as well as a grassroots movement that is raising funds in support of the ALS community.  Donations generated by the Ice Bucket Challenge for The ALS Association Golden West Chapter (www.als-icebucketchallenge.org) will support essential care services provided to the ALS community at no charge and will help advance ALS research to discover and develop effective treatments and a cure. 

People are also invited to support the ALS community at the following upcoming events:

·         Inland Empire Walk   Sunday, October 12, 2014 in La Verne

       ·         LA County Walk to Defeat ALS on Sunday, October 19, 2014 at Exposition Park, Los Angeles.

 

For more information, visit www.alsagoldenwest.org

  

Taking the Challenge
  • When doing the challenge, please use the hashtags #icebucketchallenge, #alsicebucketchallenge, and #strikeoutals.
  • The Ice Bucket Challenge may not be suitable for small children, the elderly, anyone in poor health or animals of any kind, so please use good judgment.
  • Please be thoughtful about water usage. If you’re in an area of the country or world affected by drought, please consider making a donation instead, or repurpose the water for later use.

Thank you to my guest President and CEO of the Golden West chapter of ALS Fred Fisher...for talking about what ALS is and who it affects, but also how/where all the $$ being raised from the ALS Ice Bucket Challenge...where the $$ is going and how it can make a difference for those who are suffering from it...

 www.ALS-IceBucketChallenge.org Gifts made here will benefit our chapter and local community. We also encourage people to get involved at www.alsagoldenwest.org

  

Lisa Foxx has on Fred Fisher the President & CEO of ALS's Golden West Chapter who talks about how the Ice Bucket Challenge got started!

Lisa & Fred discuss what ALS does to the body

Lisa & Fred discuss what progressive treatments and options for those who have ALS

Lisa & Fred go over ALS-related statistics and what the Golden West Chapter does for those with ALS

Fred discusses where the money that's been raised goes to.

Kelly Clarkson reveals her 'post baby body' while giggling w/her hubby for their ALS Ice Bucket Challenge...

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