Wednesday, March 12, 2008

Project: ALS Awareness Campaign, TV Celebrity Hosts


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


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:
•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

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.


1. Target four key celebrity hosts
•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.


gamboachuck aka chuck hummer

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