ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, June 28, 2009

And While The Nation's Eyes Are On ALS...

CBS just ran a teaser ad during 60 Minutes.  "The cure to Lou Gehrig's Disease may be as close as your skin."  We are to watch Katie Couric on the CBS Evening News this week to learn more.

Let's hope that it's a slow news week and that Katie Couric spends lots of time talking about skin cells and stem cells and neurons and ALS.

Thanks to 4 ALS it will be cool for the national networks to talk about Lou Gehrig's Disease this week.

17 comments:

  1. Gosh,

    I wish CBS had not resorted to sensationalism in their spiel regarding ALS and "Cures". I had two relatives call to tell me that we were very close to finding a cure for ALS and that Couric would have a special report tomorrow. Indeed, the news flash stated instead that a cure for ALS may be as close as your skin. My wife went to bed crying when she realized that she was going to talk about old hat stem cell research and that a cure for ALS is still likely many years away...

    Mike in Sacramento

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  2. Mike in Sacramento,

    Thanks for your comment. I took the liberty of forwarding it to CBS Evening News with this note. I hope they find your comments helpful. Your words speak volumes about the ALS roller coaster.
    _______________________________________________

    Dear CBS Evening News Team,

    The online world of people with ALS is abuzz and atwitter since the ad ran on CBS last evening for the upcoming news report this week on skin and a cure for ALS. Those of us who are involve in the fight against ALS are grateful to have coverage of the disease in the national media.

    I publish an ALS advocacy / awareness blog at als-advocacy.blogspot.com . It's simply a hobby to try to help add some online energy to the cause.

    This morning the comment below had been posted after the blog item about the upcoming CBS Evening News report. I thought that you would be interested in it.

    Thanks very much for what you are doing to bring ALS out of the shadows. I hope that the comment below from a man with ALS is helpful to you. It's a difficult tightrope between gaining attention and garnering false or unrealistic hope.

    Thank you very much. Have a good week.

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  3. Top five search phrases finding this site in the last 24 hours --

    "cbs evening news" "lou gehrig's"
    als cure katie couric
    katie couric als cure
    katie couric and als cure
    katie couric and cure for als skin

    There was a huge traffic spike on this site last night. The CBS teaser ads worked. The search traffic says much about the healthcare options that people with ALS have. The neurologist tells them that they have the same prognosis that Lou Gehrig did in 1939... and then they and their loved ones go home and google, grasping for some hope.

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  4. Message sent to Project ALS this morning...
    ___________
    Dear Friends at Project ALS,

    Since Katie Couric has been a good friend to your organization, I'm hoping that she might be consulting you on the upcoming piece she is doing on ALS. The teaser that CBS ran on 60 Minutes certainly got my attention.

    I publish a blog at als-advocacy.blogspot.com as a hobby. My hope is that it adds a little energy (albeit amateur energy) to the advocacy and awareness efforts. Here is the item on the CBS teaser ...
    http://als-advocacy.blogspot.com/2009/06/and-while-nations-eyes-are-on-als.html

    Last evening a gentleman with ALS (Mike in Sacramento) left a comment there that said a lot to me about that emotional roller coaster that people with ALS and their families ride. The CBS teaser certainly wasn't helpful to him and his family.

    This morning I checked the blog website traffic and it was astronomical, and the search strings finding it were all permutations of "Katie Couric" and "ALS" and "cure" and "skin cells."

    This morning the twitter and message board buzz is about the painful "hope hype" that CBS used to lure in viewers.

    As you all know too well, this is another example of the emotional line between hope and false hope for people dealing with ALS. I hope that if you are in touch with Katie Couric that you might pass along that side of talking about potential cures... along with our gratitude for her helping to bring ALS out of the shadows.

    Thank you very much for your work. We all look forward to a big July 4, 4 ALS!

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  5. Meredith and Valerie Estess just contacted me regarding the email.

    Rest assured, they are aware of the content of the Katie Couric piece and it will be good science, delivered well.

    Certainly the hope is based on the scientific groundwork being established and any immediate hope/cure should not have been inferred from the teaser.

    We should be pleased that ALS and the difficult science will get some national coverage this week.

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  6. Traffic on this site is setting records today. People are searching "Katie Couric" and "ALS" etc. and landing here.

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  7. This should give us all confidence that the feature will be well done http://www.projectals.org/media/todayDecPOP.html

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  8. Thank you Mike in Sacramento. After receiving a phone call from a family member about the possible cure we searched the web only find your comment which confirmed there is no new news or cure. We were hopefully but now devastated once again!

    Dana
    Freedom, CA

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  9. So what happened to the ALS segment?

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  10. The teaser I heard just said "this week." It didn't give a day.

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  11. Jane San Francisco CAJune 30, 2009 at 3:13 PM

    Thank you Mike, I too received calls regarding what as thought to be some new finding and possible cure for ALS which took my father 3 years ago. Not a day goes by that I do not miss him and wish there was something that would have prolonged a life robbed far too early. While having any news circulating about this terrible disease which takes away a persons ability to stand and and express, the news should be accountable for being more careful about selling their network rather than their content!

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  12. ...amen...news teasers...can be devastating

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  13. I believe the story is running tomorrow night (Wednesday July 1, 2009)

    My wife and I saw the promo for it tonight. Sounds like it will be much ado about noothing unfortunately.

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  14. having a family member living with the disease for 12 years..does CBS know that families live for the day for a cure.. or is it to try to get viewer ratings up. Whatever it is CRUEL!!!!

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  15. Reading all the comments posted as a result of the CBS Nightly News teaser ad, I know we are not alone in feeling the ad was cruel. Not only did they not indicate what day the segment would air (just that it would be this week), but they gave false hope that something is out there. Of course, we knew there wasn't something groundbreaking out there otherwise we would have heard about it through the various ALS organizations, but still....you hope. My husband has had the bulbar form of ALS for 3-years now, and is currently under the care of hospice. Cruel teaser ad. We did the same thing as others: excited about the possibility, I searched the web, Googled terms to see what I could find about any groundbreaking news about a cure, and nothing. Then to deal with concerned family and friends calling to tell us that a cure is out there, and having to explain that there isn't anything solid yet, that the segment is probably about research of what scientists/researchers hope to unveil someday, it's just more to add to our already emotionally-filled journey. Not cool.

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  16. My sister in law called me to watch tonight thinking the ALS segment was on but it is tomorrow night. My brother has ALS and we spend our time daily searching and reading whatever we can get our hands on. I don't know what tomorrow's CBS info will bring and it is hard to hear "cure" when the odds of that are probably way in the future but the up side is that ALS will be in the News. The exposure will be there and if we all want to see strides made towards a cure or a way to put the disease in remission then the more notice the disease gets the better. WE all have to have hope and try to look at the "half full" side of life rather than the "half empty" side. So no matter the stage of a cure on the CBS show, lets all hope that ALS and the destruction it causes will prompt more scientist to get in the game and find that cure!!!!

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  17. i cannot tell you how excited i was to hear there may be a possible cure for als.my husband was diagnosed about a year ago.
    it has devastating to our family.i feel like crying everday but need to be strong for my husband and 2 children.please let there be some hope in the near future

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