Monday, June 29, 2009

MLB, Lou Gehrig, the 4th of July, and a new reality

As the 70th anniversary of Lou Gehrig’s “luckiest man” speech approaches, I’ve been watching clips of the Iron Horse. Before 2005, I had never really given Lou Gehrig much thought. Baseball wasn’t on my radar growing up in a family of girls, in a small town in Alaska. Oh sure there was the occasional evening at the local ball field watching the Senior League boys playing, but that had nothing to do with Lou Gehrig. TV was a week delayed, so baseball games on TV had no relevance to me. (David Cassidy and the Partridge family, now that was worth the wait!). In 1998 our son started playing Little League baseball, and Lou Gehrig was still not on my radar. But he was in 4th grade and baseball was his life, and he had to write a research paper, Lou Gehrig blipped briefly on the radar. Our son chose to write his paper on Lou Gehrig. After reading his paper, I remember thinking, “wow, Lou Gehrig was a great guy, and yuck, what a horrible disease he had.” Never really gave Lou Gehrig a second thought. He was a guy with this amazing consecutive game streak, a home run hitting all star, and part of one of the greatest baseball teams ever in history. But still, kind of one of those people you hear about, file it away and they never seem real…just a guy in a history book.

Something happened yesterday when I was watching one of the Gehrig clips. I had seen the clip of him giving his “Luckiest Man” speech, many different times. But I saw a clip where he was talking about something else; he was talking about something ordinary, making a hand gesture that was similar to one I’d seen my husband make many times. It suddenly hit me. This guy, Lou Gehrig, he was a real person. He was a real person that lived life here on this earth, and did the same normal everyday things that my husband and I did. He brushed his teeth, combed his hair, got dressed, and lived a married life. That simple familiar hand gesture finally dissolved the myth. He went from this person in history, this baseball extraordinaire…into this normal guy doing what he loved, who was really good at it. He became real.

Before 2005, ALS-Lou Gehrig’s disease was just a myth to me. Something that was out there, but something I never really knew first hand. And honestly, who wants to know ALS first hand? It’s a horrible disease that steals from people their movement, their breathing, their speaking…all that is slowly, or quickly taken from you until you can’t walk, can’t move your arms, can’t talk, and eventually can’t breathe. This happens while your mind is still sharp as a tack and you become trapped inside this shell of a person that you used to be.

On June 23, 2005, the myth became the reality. My husband was diagnosed with ALS-Lou Gehrig’s disease. Lou Gehrig was no longer just this historical guy who lived briefly and sporadically and in the fringes of our lives. He was now up front and center….standing on our home plate. In the beginning it didn’t seem so bad. My husband has a slow progression of the disease, and it was a couple years before the full impact of the disease hit home. Now we live with wheelchairs, stair lifts, and a dandy white handicap assessable mini van that’s about at the opposite end of the spectrum as you can get from the convertible BMW my husband wanted to drive in retirement. ALS, the reality steals from you in so many ways you never really thought about. Lou Gehrig lives fulltime in our dug out, as good as a guy as he was, his disease presence is just too real now. We don’t like it.

To most people my age, ALS is myth…you read about Lou Gehrig, you see his statistics, he was this baseball player way back in the day, who got a “bad break” being diagnosed with ALS. But come on, Lou Gehrig died 68 years ago. What have we heard about ALS, publicly, out in front of the masses like we hear about cancer, since that time? Not much. That makes ALS seem unreal to people…it’s just this disease that this really great baseball player had, years and years ago. Unless you know someone personally who has ALS, you’ll probably never run across someone who has ALS. The other problem with ALS is, most people who are diagnosed with this disease, die within 2-5 years. It’s a really crummy way to spend the last years of your life, and it takes its toll on those who are left behind in its wake.

Because people die from this disease, because there is no cure, because there is no long term life extending treatment, there are no survivors. Let me repeat that, no one survives ALS. The myth continues because there are no survivors to shout from the rooftops how horrible this disease is, and why we need to rally around, raise money, and find a stinking cure. We need to make aware that this disease can strike anyone, anywhere, at anytime in their life. We need to make aware that this disease is not just “something” named after baseball great Lou Gehrig. We need to make aware that this disease strikes real people; moms, dads, grandparents, sisters, brothers, aunts, uncles, nephews, nieces, baseball players, boxers, football players, soccer players, golfers and veterans.

The urgent thing that needs to be done is make people care about this disease. We need to move it from a myth to a reality. We need to make people realize this could happen to them, happen to their family… normal everyday people who used to be able to brush their teeth, comb their hair, lift a fork, dress themselves, drive, score touchdowns, and swing a bat. All that is lost with ALS and those normal everyday hand gestures need to be remembered when we fight for this disease.

This 4th of July, that can happen. This 4th of July is the 70th anniversary of Lou Gehrig’s “luckiest man” speech. Major league baseball stadiums throughout the country will be commemorating Lou Gehrig’s speech. Major League Baseball is partnering with 4 major ALS groups to raise awareness, and money. These four groups, have all been working, in their own way to try and find an end to this disease. But maybe under Major League Baseball’s umbrella, maybe this fight for awareness will hit home with those in attendance. Maybe someone out there in one of those ballparks will donate THE dollar to find a treatment to slow this rotten disease down. If you can’t make it to the ballpark, or your MLB team is away on the 4th, there are other ways to help.

Maybe on the 70th anniversary of Lou Gehrig’s speech, ALS, the disease, will move from the myth and legend of a great baseball player, to the reality of a cure.

For more information:

ALS Flashback - Katie Couric

Jenifer Estess-Project ALS-

book "Tales from the Bed"

Today (video)- Katie Couric pays tribute to Project A.L.S. founder, Jenifer Estess. - December 17, 2003

NBC's Robert Bazell reports on Project A.L.S. gene therapy breakthrough - August 8, 2003
HBO documentary produced by Academy Award winner Sheila Nevins.
Katie Couric covers the early impact of Project A.L.S. - July 6, 2000
NBC Nighly News- Project A.L.S. profile - March 1, 2000
Charlie Rose interviews Jenifer Estess - February 16, 2000

Wednesday, June 24, 2009

Dear Boards Of Directors

Did you receive some staff reports in the last few months that your organization is on Facebook now? Did that get an enthusiastic nod of approval from the board? How about the report that you're on twitter? Did the members give a big thank you to the staff for making sure you're where it's at (whatever "it" is)?

And what does all of this mean? Social media can be a two-edged sword. Smart organizations look before they leap... and they figure some important things out.

Have you duplicated content already on your organization's website and now have two or three spots to maintain? Are you taking staff time just to be in different places? What's the plan? What's the goal? What's the prize? What's the point?

Yesterday there was an interesting online chat that @ALSofGNY pointed out to fellow twitterers. It was held by . A quote from that chat should be displayed in every not-for-profit boardroom in the nation: " media is not about promoting your organizations. It's about becoming part of the conversation." (Nancy Schwartz of ).

Next time you get a staff report that mentions Facebook, how about asking how the organization has become part of the conversation? Better yet, perhaps you should ask your board if you  even want to be part of the conversation?

Do you have a neighbor who continues to plant shrubs and flowers yet can't keep the grass cut? It's good to do a check of your not-for-profit basics before you put down roots in social media.

If you're not able to respond to your constituent emails today, then it's time to deal with that problem and postpone the social media which demand a commitment to constant, timely response. If your website is not well-maintained, then it's time to deal with that problem and skip social media for now. If you're not keeping up with thank you letters for donations, then you had best fix that problem before engaging in online, public conversations.

If you don't allow staff members to engage in public media conversations, then your static presence on Facebook and twitter and other social media sites is just making busywork (and makes you look pretty foolish). If you twitter stream is just press releases, then you're neither contributing nor receiving any of the unique energy of twitter.

If you don't have staff members capable of engaging in public conversations, you have an opportunity to hone some new staff skills and responsibilities. It's not about technology. It's not about traditional press releases. It's a conversation. It's a chance to talk with your clientele and peers. It's a big opportunity.  It's a lot more than putting up a Facebook page and walking away for a month, though.

It's not about simply "being on" Facebook and Inspire and Patientslikeme and twitter and and alsforums and myMDA. It's about targeting constituent groups and being an active part of the conversation. It's about promoting the cause rather than your specific organization.

This is the perfect opportunity for your board and staff to sit down and figure some things out together.

Different web-based media appeal to different constituencies. One size never fits all. Figure it out. Target and engage appropriately. Ask why you would want to engage on a specific medium. Figure it out. What are the strengths of each medium. Figure it out. What does each add uniquely to your ability to be a part of the conversation? Figure it out. Can you talk with people rather than to people in a public space? That's a big question. Figure it out.

Don't give those approving nods until you try to figure it out. Having a Facebook page and 500 "friends" means nothing if you're not part of the conversation.

We look forward to you being part of that conversation.


Wednesday, June 17, 2009

We Have Met The Enemy And He Is...

ALS or us?

Following is from current issue of The Benefactor in an article highlighting the questions to ask when investigating a charity before making a gift.  It would be interesting to know the answer to the question on the efficiencies of collaboration from the big players in the fight against ALS.

It's not a naive question.  It's not a stupid question.

HELPFUL HINTS: Asking Nonprofit Organizations the Right Questions

Many dedicated donors understand the 

importance of asking the right questions 

to ensure that their giving goals are 

accomplished. It is essential, particularly 

during challenging economic times, for 

you to further your understanding about 

nonprofit organizations’ budgets as well as 

their short and long term strategic plans. 

We encourage you to ask your favorite 

charities the following questions: 




Stories of corporate restructuring and cre- 

ative ways to cut costs permeate the news on 

a daily basis. While the actions of publicly 

traded companies are well-documented for 

shareholders, this is not always the case with 

the nonprofit sector. Donors should hold 

accountable the charitable organizations they 

support. Asking about specific actions the 

organization is taking to combat today’s 

difficult economy, reviewing its business 

plan, and examining its budget are great 

ways to increase your understanding. 




The need for services and solutions is 

increasing, and the costs associated with 

delivering them are also escalating. Facing 

this conundrum, it may be worthwhile for 

nonprofit organizations to consider join- 

ing forces to achieve the higher good. You 

should ask if, and how, a charity is working 

with other nonprofit organizations to meet 

needs in the most efficient way. If the 

organization is not collaborating with others, 

you may want to encourage them to do so. 





Today’s economic environment has caused 

many organizations to reevaluate how they 

operate and to make difficult budget 

decisions. Numerous charities are revisiting 

their strategic plans and programs so that 

smart decisions are made to uphold 

their core missions. Ask the nonprofit 

organizations you support what steps they 

are taking along these lines and what 

trade-offs they may be facing. 



If you have supported several charities in 

past years, you may consider examining 

them more closely to identify which has 

the strongest need. An increasing need for 

resources and services, as well as growing 

evidence of their impact, are strong 

indicators of organizations that continue 

to require support from donors. Charities 

should be able to quantify their service 

needs and to openly discuss their track 

records when you ask. 

Tuesday, June 16, 2009

Here Are Some Twitterers For Your Consideration

If twitter can play an important role to those interested in the exercise of democracy in Iran, then perhaps it will help us with the relatively simple task of being good ALS advocates.

At one time twitter seemed like a solution in search of a problem. It's now starting to find some good problems where it can engage conversation. There are a number people who twitter about ALS. I highly recommend that you consider following some of them.

@alscanada is simply the best. This is an example of a not-for-profit that understands the unique role that twitter can play in communication. @alscanada adds energy, spontaneity, and a sharp mind to twitterspace.

Here are a few more for your consideration:


It's an art form. It's not about press releases and planned communication. I'm not sure it has reached its best use, but it's moving in a good direction for ALS awareness with the tweets from these people and others.

Thursday, June 11, 2009

U.S. should fund ALS research

How much is a human life worth?

According to the United States government, mine is not valued very highly.
In 2003, I began experiencing symptoms later diagnosed as amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS is a progressive neuromuscular disorder that weakens and destroys motor neurons, causing paralysis and death. There is no cure or effective treatment. In the 150 years that we have known about ALS, science has unveiled few answers as to its cause or progression.

About 35,000 people in the U.S. live with ALS at any given time, including an alarming number of recent veterans. As ALS is relatively rare, I was disappointed but not surprised to find pharmaceutical companies uninterested in funding research, but was shocked how government supports ALS research compared with other conditions.

I found the National Institutes of Health spends billions of dollars for research -- the vast majority targeting preventable, treatable and non-life threatening diseases. The sample below provides perspective on how much money the NIH was willing to spend in 2008 to prevent each death from these diseases: HIV/AIDS, $198,263; substance abuse, $162,353; sexually transmitted diseases, $40,833; ALS, $7,167.

I shared my statistical analysis with U.S. Rep. Bill Foster (D-Ill.). He was impressed by the manner in which these statistics highlight inequities in NIH grant allocations and believes hard statistics help legislators make good decisions about how and where to direct federal funding.

Don't misunderstand me. The targets of NIH research dollars are deserving. However, I believe government's main role in health research should focus on basic research and on areas deemed unprofitable by private industry.

July 4 marks the 70th anniversary of Lou Gehrig's famous "Luckiest Man" speech, and many ALS awareness activities are planned to commemorate this occasion. Please help raise awareness of ALS by sharing this information with elected federal officials and the secretary of Health and Human Services.


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?