[BobbyB]

May I have your Attention ! Please !

All of you have expressed an interest in this project. TO BAND TOGETHER FOR PALS. To get the word out to the public that ALS is a disease striking more and more people of all ages every day - We intend to do this by targeting four major TV celebrities. A second phase will involve targeting a number of national magazines. We are setting April 1st as the date to have each of us write or email the four celebrities.

We are about to open the blog up for all of your stories - The blog will serve as a library to capture all our stories and photos for this campaign.


If you are a CALS caring for a loved one or friend with ALS or a PALS having ALS yourself - We need you to write your story and put it on the blog!

And remember a picture says a 1,000 words. If you feel comfortable please add a picture/ pictures to your story.

I am asking each of you to respond back to me:
1. We would really like to know what city / state you live in so we can assign you to a team leader of your appropriate region.
2. Your name if you feel comfortable giving that to us but not a must.
3. If you are a CALS or PALS - again if you feel comfortable telling us this.

To really get this project going we must have your story - about a page in length - however when I wrote my story about my daughter it was a page in length but when I put it on the blog it looks like a book but it really is not.

Write from your heart - that is what I try to do -

I am attaching the "outline" of what we are doing and what you need to add into your story.

Thank you for your time in reading this - looking forward to reading your story.

Please respond to this e-mail so we will know yours is an active e-mail account.

Linda F. Gibson
CALS to my daughter Marcie
DX with ALS in 1994
She was only 23 years old
Marcie is 37 now
Feed by a PEG tube since the summer of '04
Vented and Trached on her 36th birthday in '06
Using ERICA to communicate with
LIVING with ALS
Arlington, TX

blog: http://linda-gibson.blogspot.com/

lindafgibson@tx.rr.com

___________________________________
Project: ALS Awareness Campaign, TV Celebrity Hosts

Concept:

Email and letter writing campaign to TV celebrity hosts to raise
awareness of ALS by general public. Objective is have one or more of
the hosts to feature a segment on ALS, preferably by showcasing
several people living with ALS. Campaign will solicit all people
living with ALS and their caregivers to write TV celebrity hosts with
a short letter or email giving a picture of how ALS has affected their
lives.

Format:

1. No form letters (they lack personality and beg to be ignored.)

2. Letters should cover in some order some or all of the following:
•Name
•Age
•Occupation
•Patient or caregiver
•Family situation
•Major impact of ALS on life
•Major frustration or wish
•A single photograph.

3. Try to keep letters to a single page. Long letters lose
readers. Short personal letters are attention getters.

4. Think of casting a bait, you don't want it too heavy and too
big to be of interest or to swallow whole.

5. It is hard to boil down a message into one page but if you
want your story read, the shorter the better.

6. Should the production staff wish to know more about ALS, we
will have a reference to an information page on the internet to which
to refer them when asked.

The stories about the sad stories of PALS aren't getting the job done.
Every sad story needs to target some spark of rage so that the host
or audience can grasp an action item.

Last year at Advocacy Day our group's congressional staff meetings
turned into Queen for a Day misery sharing rather than making a couple
of quick hit anecdotes to bring ALS to life that then ended with a
specific ask.

Every PALS's story needs to hook itself with a potential social or
legislative or medical action item.

Some ideas --

For a young parent PALS -- This disease is turning my children into
caregivers and they are not only losing a parent but also some of
their childhood. How can we fix this problem? Better benefits for
home caregivers would be a start. Programs for children of PALS would
help.

For any PALS -- I was handed a diagnosis with no tools to fight it.
Why in 2008 , over six decades since Lou Gehrig died, have we not
given people some therapy that might lead to a cure. We sent a man to
the moon almost 30 years ago but we still have not addressed this
public health problem.

For PALS who are no longer to work -- I have been a productive
contributor for many years and this disease steals that against my
will. I'm not ready to give up but need great deals of help from
caregivers and technology to continue to contribute. This isn't
cheap. We shouldn't write off PALS, but we need to fund the help they
need to continue to be positive contributors.

For military -- Does my government not owe us all an explanation? (A
bunch of veteran/PALS seems like an interesting concept to me)...

Just telling the story and expecting the host and audience to come up
with the needed action(s) doesn't work (although it should). I think
that every story needs to be crafted with a point in mind that will
specifically ask for an action.

Also, I realize that Oprah is huge and her interest would be
wonderful. She was involved in the production of the TV edition of
Tuesdays with Morrie. Maybe all communications to her need to hook to
that? She's knows what ALS is from Tuesdays with Morrie.

As much as it's about the individual PALS and families, it's also
about a public health problem and a societal problem about how we
respect and treat those who are slapped with a difficult, terminal
diagnosis. We have to help the host and audience make the leap from
individual to the big problem... and it never hurts to leave people
unaffected by ALS to think that they could be next.

Methodology:

1. Target four key celebrity hosts
•Oprah
•Ellen
•Montel Williams
•Larry King

2. Advance preparation to include:
•Widely soliciting participation by PALS and CALS using Living
with ALS, ALS TDI Forum, PLM Forum, ALS Advocacy group.
•Set target date to begin campaign; Idea is to create a
flurry of mail that has individuality and personality to get the
interest of show producers.

3. Begin campaign by email and snail mail. Provide a copy of
submission to blog set up for this purpose so we end up with a full
complement of stories of interest to internet readers.

Let's use Ken Patterson's Rolling Over ALS Tour from Orlando to
Washington, DC, as the constant hook in each of our emails/letters.
His tour starts from Orlando on April 19th and should be the public
interest story to focus attention.

NOW LET'S GET THIS THING GOING!!!

gamboachuck aka chuck hummer



Charles W. Hummer, Jr.
President Emeritus
Panama Canal Museum
Ambassador, ALS TDI
Advocate, ALS Association
http://www.myspace.com/gamboachuck

[BobbyB]

Many have talked about it. Why don't TV personalities like Oprah, Ellen, Montel or Larry King have a segment on ALS. Now you can do something about it.

There is a campaign to have PALS and CALS write or email four TV personalities. The goal is to interest one or more of them to feature ALS on their shows.

Ken Patterson Sr. is riding his power chair 840 miles from Orlando to Washington, DC, as an ALS awareness event. We hope that Ken's Rolling Over ALS Tour will be the hook for one or more of the TV shows.

You are invited to join the nearly 300 who have already signed up to join this campaign. Send your email to Pat, gulfportgal@tampabay.rr.com, or Linda, lindafgibson@tx.rr.com, to be invited to the Banding Together Blog where letters and emails will be posted along with some simple instructions on how the campaign is being organized. The campaign is shooting to start flooding these celebrities with letters and emails beginning April 1st.