Wednesday, June 3, 2009

Dear ALS P.R. Machines, Let's Set Some Goals for 2010

Yesterday was the anniversary of Lou Gehrig's tragic and untimely death from amyotrophic lateral sclerosis. It was also, to the day, the anniversary of Gehrig's replacement of Wally Pipp at first base for the Yankees in 1925 -- the beginning of the remarkable Iron Horse's playing streak. Lou Gehrig represents much for the people with ALS today. They are courageous as he was. Their early demises are tragic as his was. They are faced with the same terminal outlook that he faced when he took himself out of the lineup and ended his playing streak in 1939.

Why did that famous day in history go without a peep from the public relations and communications machines at our ALS not-for-profit organizations that are supposed to be raising ALS awareness? Many media outlets remember days in history, yet yesterday they remembered Lou's passing from their generic "this day in history" subscriptions without any added information on the problem of ALS that persists today.

On June 19 we will celebrate Lou Gehrig's birthday. Will that pass by without fanfare and meaningful information about ALS, too?

Most marketing professionals would salivate over a "product" that is so well branded as Lou Gehrig's Disease. Let's know what to do with that branding.

It's time to set some public relations and communications goals for 2010. Perhaps the professionals paid to communicate on behalf of those with ALS will consider the following for their goal-setting:

Let's get the United States in synchronization with the rest of the world and celebrate ALS / MND awareness month in June. We can still go to Washington in May and publish the moving patients vignettes from MDA and ALSA in May, but let's have a coordinated ALS Awareness Month effort in June. There are some important ALS-in-history dates in June, and we'll move the focus from the differing organization and months of awareness to the disease itself.

Let's work together for the sole purpose of raising the global visibility and concern regarding the disease itself. Let's make people worldwide start asking questions about why it hasn't been cured. Let's make the healthy squirm a little that there is a fatal neurological disease out there that could strike their families next. Let's make the young researchers curious. Let's talk about ALS and not ALS organizations.

Let's have some concrete goals for editorial mentions of ALS in June, 2010. Inches and airtime and page visits add up to awareness. Working with a coordinated press strategy, we might just hit some big media outlets internationally.

Let's tell the world about those goals before June, 2010. It puts all of our feet to the fire when we set goals and let people know our commitments for the future. No ALS not-for-profit can guarantee a cure before 2010, but all can guarantee meeting some goals for broadcast, print, and web coverage of ALS.

Perhaps June, 2010, will be a very effective month in raising ALS awareness. Does anybody involved in ALS public relations and media communications want to seize the opportunity like Lou would... or will you be on the bench like Wally?


Anonymous said...

Awesome blog. Thanks for writing this!

Sleepy said...

From The International Alliance of ALS/MND Associations --

"What is the International Alliance?
The International Alliance of ALS/MND Associations (The Alliance) is a not for profit association. Its members are ALS/MND organizations from around the world.

What is its purpose?
Its purpose is to achieve the highest quality of life for people affected by ALS/MND and its related conditions throughout the world. It does this by sponsoring participation in an annual meeting of associations, by sharing experiences of individual members, and by undertaking global initiatives to advance the interests of people living with ALS/MND. Initiatives undertaken include development of statements on good practice in drug trials and genetic testing; promoting and encouraging research; development of a baseline of services; awarding annually the Forbes Norris and Humanitarian Awards; developing and maintaining a web site; international resource sharing via the internet; encouraging formation of new patient support associations; and coordination of ALS/MND Global Day on 21 June.

ALSA, ALSTDI, Les Turner's, and ALS March of Faces are listed as North American members. What will happen on June 21???

ALSadvocacy said...

Anonymous said...

I guess this post begs the question, "Do the national ALS organizations have PR machines?"

Maybe one of them could send national spokesperson, Angela Lansbury, a red ALS bracelet. That's a novel idea isn't it?

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