My turn for a quick rant

[ZenArcher]

You know what pisses me off? If I ask 50 people on the street what ALS is I'd probably get 5 that could tell me what it stands for or know Lou Gehrig's. Out of those maybe 2 that actually know something about the disease. That isn't the problem that is part of our job now; to educate.

What is the problem is that for the last year I've been writing to TV shows and news programs, etc trying to get air time for ALS to no avail. Yet what Earth shattering news do I see this morning on Good Morning America; Miley Cyrus didn't wear a seatbelt and the facts around seatbelt related deaths followed closely by the fact that Aretha Franklin is upset because Beyonce called Tina Turner the "Queen of Soul". For some reason it touched a nerve this morning so me being me; I go to the GMA web page to explain my ire. Well that only made things worse because they are kind enough to give me 500 characters to do so. So now I have about 4 - 5 sentences to explain myself. That just made me angrier. Well I managed to get the point across without too much venom and in 496 characters.

What is it that we need to do to get the slightest acknowledgment from the news/talk shows? I mean we have stories that will make you cry, stories that will make you laugh, people that have shown more courage and strength than any Survivor winner, we have controversy, hope and humanity. What is it exactly that we're missing that we can't even get a 5 minute spot on the local news.

Ok, now I feel better although as I was typing this they had another important story about a $1.8 million dress that weighed so much they had to do the photo shoot in short intervals. Oh well the fight continues; It is better to die fighting than live fleeing.

[Jeliota]

You know, I really think there needs to be a non-profit that concentrates on fund-raising and awareness raising. The ALSA does a good job with what it does, but as someone on the outside who has tried repeatedly to offer assistance, I can tell you that at least the TN chapter is very frustrating and unresponsive to offers of help. It took them months of harassment to even get me a volunteer form. The entirety of their public involvement is the annual walk.

We need an organization that shows the same kind of determination and fight that the Susan G. Komen Breast Cancer Foundation shows. I can't walk out my front door without getting hit in the head with a pink ribbon, and it seems like there's a new event every week.

[stevef]

I hate to say it Jeff but unfortunatly that is today's society. I also hate to say it but it seems people are not to worried about something like ALS unless it effects them or someone they know in a personal way. It does not get the press like something like say Parkinson's get becuase Parkinson's has a high profiled person Micheal J. Fox who has it or say MS where so many more people are effected compared to ALS. Big drug companies do not want to invest there time into a disease that the numbers do not mean a huge profit to them. You never want to see someone come down with a disease but unfortunatly it seems that is what it takes is a high profiled person to get something for the country to care.

[ZenArcher]

Jeliota, I won't argue...too much :). I have to defend the ALS Association at least a little because of some of the things I've learned. I can't speak to the TN chapter but I can speak for the Greater Philadelphia and National Chapters. As far as the Greater Philadelphia chapter goes they provide clinic for over 800 ALS patients covering the eastern half of Pennsylvania, southern New Jersey and all of Delaware. The clinics take no money out of pocket from patients, they do expect insurance to pay but not the patient. They have to loan closet, respite care, caregiver days, etc. Monday I was in the state capitol for ALS Awareness day and learned that they did all of this without state backed funding. For that I applaud them. The National chapter has been responsible for the automatic qualification for SSI and Medicare as well as the ALS Registry as far as its gotten. Do we need more absolutely but they have done quite a bit for us. There is more happening on the information front as well. Angela Landsbury has done some appearances which will be released shortly. You can see it here but it won't play yet: http://www.youtube.com/user/alsassociation

I agree we need more but we need to help as well. As I said above there are 800 PALS served by the Greater Philadelphia Chapter. Take a guess at how many were at ALS Awareness Day...3. There are 30,000 PALS in the U.S. but how many went to D.C. last year...900. I'm not trying to shame anyone or place blame or anything other than state simple facts.

If you are still having problems volunteering let me know and I'll get you in contact with some of the people at the National Chapter. They'll find a way to use you :)


Steve, we are today's society at least a part of it. We need to let the media know our desires or they'll follow market research. Can we change them probably not but if we can get a 5 minute spot that's 5 minutes more than we had before.

Not to wax to philosophical but, "No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee." Ignorance may be bliss but it is a bliss that can very quickly shatter around you. We need to make people care for our sake, for the sake of those before us and for the sake of those to come.

I guess I should have prefaced this whole post with "In my opinion". Have you guys noticed yet, I have one or two of them :mrgreen:

[Icanmanz]

Jeff, I agree with you 100%. Just like yesterday, it was Roger Clemens Day. Who cares whether he was injected steroids or not! They are all a bunch of lying clowns!!! How many times have you seen them talking about our Pals hour after hour, after hour? I got fed up with that mess on TV yesterday. Just like our DA here in Houston, Chuck Rosenthal, he is in hot water, and he has been getting so much attention! As if we care because he sent romantic emails to his mistress! This is so messed up!

Irma

Sorry folks, didn't mean to get off topic! Just letting off some steam!

[Jeliota]

ZenArcher, you are absolutely right (I bet you're relieved to get my stamp of approval :-D)

I just think it would be nice to have an organization that concentrates on the other things, like constantly being in front of the publics' noses, raising money to raise more money (for research, hammering home the message, for donating to ALSA, ALS TDI, etc.) and just generally being bothersome.

From an outsider's perspective, it seems it would be hard to expect much more participation from a patient group with a disease that is this devastating emotionally and moves so quickly to severe disability. With something like cancer, you have survivors to carry the flame. My wife, for instance, almost died from a pulmonary embolism and now sits on the board of directors for the Vascular Disease Foundation (which mostly targets hospital staff). The embolism was three years and eight months ago. If it had been ALS instead of a PE, would she be in any condition now to participate as she does? Maybe, but who knows? Plus, once she was over the PE, she was over it. It took about 3 months and then she was back to normal and able to pursue this with a passion without physical limitations and costly ongoing expenses.

Okay, now I'm just rambling. But, yes, the ALSA is definitely doing what they do very well. I would just like to see a greater focus on marketing.

Paul

[Jamiet]

You know what bothered me........this article, which is published in a major medical journal on lithium....claims to possibly stop ALS in its tracks, they publish it and it doesn't even make the front page...!!!!

Jeff, i'm with you....i'm mad at the world for this crap....Irma is spot on...why don't they leave roger clemens alone, i bet 50% of us here has smoked a joint at some time or another.......yes, i'm guilty....not ashame of it, but i grew up......people make mistakes...the more that they talk about it. the more it gets published..the more kids will be shooting up steroids to throw a baseball like roger clemens...

[ZenArcher]

You know the one point about the whole steroids in baseball thing that I just don't get is why are the hearings being held by Congress? I guess this takes precedence over things like oh I don't know, the ALS Registry, an exit strategy, the economy or pick another couple thousands things that ACTUALLY MATTER :evil:

If you don't want steroids in sports make them a controlled substance.......oh wait, they are. Alright then make it illegal to use that substance without a prescription......oh wait, it is. Then institute random drug testing.....oh yeah, they do.

If they pop positive on a drug test kick 'em to the curb. If not then there is this saying I've heard a couple times, "Innocent until proven guilty". Apparently that's far to simple, instead we have to have a congressional hearing for a hearsay accusation.

See you guys are stirring me up again. There is a letter forming in my mind already. First I've got to write to the View to see if I can get Joy Behar to ask Elizabeth why McCain as a former POW won't support the ALS Registry act when studies show that vets are twice as likely to develop ALS. That should stir up some fun if it happens :twisted:

**cue evil laugh in the background**

MUAHAHAHA MUAHAHAHA MUAHAHAHA

[joe stockton]

Hi Zen,

I'm going to repeat why I believe there was such a strong research push for ALS in Italy. Major Italian Soccer stars were developing ALS. For Italy this is similar to when Magic Johnson announced he had HIV. I remember how all of a sudden HIV funding proposals roared through the halls of Congress.. This is big news in Italy, tv, newspaper and radio. Thank God we have the internet ...it is a very powerful tool...compare the NY Times stock price to Googles stock price...exactly! million more eyeballs on the web today. ALS has a voice!

To answer the Mylie Cyrus issue, I think Ben Stein hit the nail on the head.

http://www.benstein.com/121805xmas.html

All the best, Joe

[Al]

OK Jamiet. I admit it. I did smoke a joint once, but I didn't inhale. I'm cheesed off too. I have not seen one bit of news in the mainstream media about the Lithium project here in Canada. Sad. At least they are going to be doing a cross Canada drug trial here.
AL.

[CindyM]

I agree that our national priorities are screwed up, at least here in the states. I've never been interested in, for example, a stain on a White House intern's dress, or what Anna Nicole's baby is doing for her first birthday. THere are other more important issues to consider.

I don't care if there is "only" a few families affected with ALS. We need more awareness, more research, more $. JMO Cindy

[stevef]

Curt Schilling is trying to raise issues about ALS. He has what is called Curt's pitch for ALS. unfortunatly his biggest fund raiser will take a hit this year since he will nto be pitching as much and you have in the past been able to donate based of his strikeouts each year. Maybe he can find another pitcher on the team to take over like Beckett who is lights out. Olny if more guys like Curt got involved it make bring it to attention

[ZenArcher]

Jamiet & Al, let me just say that my roommate in college was a subscriber to High Times and I'll leave it at that.

Joe, only problem is I have two daughters 12 and 14 I more than know who Miley Cyrus is I almost know all the words to her songs :oops:

Cindy, I have to confess I paid attention to the stain :-D

**WARNING CONVOLUTED THOUGHT PROCESS AHEAD: APPROACH WITH CAUTION**

As I was writing this the question that flashed through my mind was how do we fix it? The first thing that came to mind was emailing everyone which is what I do. This was followed shortly by the realization that a lot of people don't like composing letters or emails for this kind of stuff. Well what if we used a common letter? Yeah but then its hard for people to get it to everyone. But the ALS Association website has a page to do that.

**ADHD MOMENT COMPLETED**

So here's a what if. If a letter was pre-written so that all you needed to do was cut and past the text into a web form, granted probably a couple times to get everybody, would you <tap><tap> Yeah YOU be willing to participate in monthly email barrage of places like Oprah, CNN and whatever other national or local media outlets you choose and for U.S. residents the President and federal legislators?


Steve: Excellent point. Here's the website: http://38pitches.com/

[Jamiet]

LOLOLL

HEY YALL....HAPPY VALENTINES DAY...


Hey all you guys...make sure you get the ole lady...(oops...the women ain't supposed to hear us say that...).....some flowers...if you can't get out...at least draw her one...and if you can't do that, just a kiss will work for the wife that loves all of us so dearly....

yes, mine is the best...sorry guys....you can't have her.... (Well, if you could afford her, maybe..)...OK...LOL...corny joke....and if she reads this....I'll be sleeping in the dog house tonight...

ZEN...you've got us all fired up, i'm ready to whip some arse....

Good day...

Rgds,

Jamie

[rick/Wpg]

Hey all!
GOOD RANTING!
Zen - you really hit a nerve! My wife Joan and I are new to this...just got my dx a couple weeks ago but have been on the forum a couple months now... ... have mobility and my mouth works great for now so we are getting involved in our area...everything from fundraising ideas to media coverage , etc.
The ALS society in our area is golden but they need $$$ and media help...can't believe the lack of coverage and awareness!!

Anyhow...I find my ranting is best done later in the day cause then I can have a couple of "cold ones" to calm down :) Off to do that now!
Will be connecting for some of those ideas re the media... the more of us doing it the better!
Rant On!!!!
Thanks!
Rick

[ZenArcher]

Stay tuned I'm trying to figure out how to make this work.

[kelly]

I read these posts out loud to my husband tonight. I am willing to help...or at least recruit some friends to help. They are always asking me how they can help.....so count me in.

[trying to stay positive]

I agree, I agree, I agree! On a positive note, on yesterday's local noon news, WGN TV in Chicago, there was a brief spot on Augie's latest fundraiser in Chicago. 175 K raised!
Linda

[CindyM]

Hey, Jeff- I'd email a few folks! Cindy

[Jamiet]

count me in......

Jeff, which side of the bed did you wake up on today???? LOL..... Don't get us started too early....

[ZenArcher]

Who said I woke up?!?! Its a lie, a lie I tell ya!!

I'm working on a way to make this as easy as possible. I've got some letters put together, at least short ones. Right now I'm working on instructions links and a delivery system.

For some reason this things next to me keeps ringing though and slowing me down.

[Carolan]

I hear ya, Jeff. I'm so tired of all the celebrity "news," and I keep hoping that it will fade away.

There are so many diseases that need attention, and motor neuron disease is at the top of my list. One problem is that the survival rate is so short for most people that there is a high "turnover" in the ALS population. So it seems to me that the strategy for ALS publicity should take this into account. I would love to see a high-profile documentary that focuses on the progression of the disease and really shows people what happens. My mom would never agree to something like that, so I can't offer to do it, though.

This is a good place to develop some ideas, and I hope others will come up with some suggestions. I'd be glad to help out.

[swmn]

Sorry - I have been comprimised with time lately and when I read the thread - all I could do is agree agree agree!!!!!!! I have submitted my friend's story to a local news channel who does a "someone you should know" feature regarding my friend's dedication to education despite this devastating disease - actually is on the stories of hope as a thread - then I found this -OMG!! I posted this on the stories of hope b/c I have not heard from our local tv staation at all and I feel so bad - My friend is so dedicated as many of you and your pals - so I am greatly disturbed at the lack of compassion and concern for the people who endure this pain and suffering. I will do any thing to help!

[ZenArcher]

Ok, I spent yesterday trying to get some things together. What I ended up with is a very rough beginning and can be found here:

http://www.advocate4ALS.org

The website will be dedicated solely to advocacy. I need ideas in terms of ways to make the site easier, content for articles and letters and contacts. Take a look at let me know.

Note that if you register you will be sent an email with a validation link. This link must be followed to complete registration.

[jimercat]

Website looks great Jeff! Count me and my PALS in!

I find that even when you explain ALS to people you still get the deer in the headlights look! LOL It goes back to "it can't happen to me" syndrome. That's why I think a really graphic look into the process of this disease needs to be put into people's faces. Not for sympathy, but for more attention to research $$$ and a cure. And for more rights for people in a PALS situation. There are too many obstacles that vary from state to state and by the time these are negotiated, you've wasted precious time that PALS don't have!!!

We are also trying to advocate in our corner of the world and would be happy to join you.

[swmn]

If at first you dont succeed.....!
Just wanted to let you all know that I had success with getting my friend John Featured on a local news program - check out the post in "stories of hope" - "strength, hope & persistence" They plan to interview and do a story on him and his coragious fight against ALS while continuing his passion for educating kids!!

WHOOOO HOOOO!!!

I am so Hppy this news program will take initiative to educate our extended community about ALS.

IBy the way, Jeff - nice Job with the advocacy site - just visited - and i will join soon -

[CindyM]

Wow, Jeff. Nicely done and quickly, too.

[ZenArcher]

Thank you. Its a start but nowhere near what I want. The only problem is there isn't anything out there like what I want so I'm just going to have to make it. In the meantime I can use everyone's help. If you've written letters in the past and can generalize them please submit them using the Submit News link. If you've got any artistic/web graphics ability please feel free to make a real logo. If you or someone you know has PHP or Ruby on Rails experience please get in touch with me.

[joe stockton]

Front page everywhere! who is PinK? Still cant find a story on the Italian Research in any national newspaper!

[stevef]

I sent one of the letter that jeff wrote up on his web site and so far only heard back from on of my state senators and here was the responce

I want you to know how much I appreciate the fact that you took the time to write to me about your important issue. All too often, citizens of our country choose to be part of the "silent majority," in spite of the many issues of concern to them.\

It is primarily through correspondence such as yours that I am able to obtain the insights and understand the needs and priorities of my constituents and people throughout the country. I intend to do all I can to be an effective Senator in meeting the many challenges we face

It is my hope that we will be able to make progress on issues of special concern to you and so many other Americans, and I thank you again for your letter.


Sincerely,
Edward M. Kennedy


This is an absloute joke responce. Obviously this is not from Senator Kennedy but from his office which I kinda figured it would, however they could ahve at least made the effort to make it seem like the read it. Not once in the responce is ALS metioned. Just metion special concern and important issue. It is like all letter like that get group into one special interest group at the office wihtout any concern for what it is.

[Uncertainty]

Yeah, that response from Kennedy's office is obvious boilerplate. No doubt you'd get the same treatment from 99% of the congressmen or senators you'd write. Unless your issue is in the media in a big way, or you're giving megabucks to their campaign, it's just not an issue to them. :roll:

Which is why I think the general public isn't going to truly care about ALS until a famous person gets it AND speaks out about it in a persistent way. You need only look at examples like Christopher Reeve or Michael J. Fox to see how much it helps to have a truly committed celebrity spokesperson.

Unfortunately, with ALS, if anyone very famous DID get it, they'd likely be dead or incapacitated fairly quickly. The sole exception I can think of is Stephen Hawking, who's well-known and who's lived with ALS for over 45 years (amazing).

I don't know how active Hawking is in speaking out about ALS (don't recall hearing much from him on it, but that may just be me), but I'd imagine he'd be an amazing spokesperson if he ever focused his energies that way. Hawking in an ALS commercial would really be something....


Edit- Well, hush my mouth, Hawking actually DID do an ALS commercial! :) :

http://findarticles.com/p/articles/mi_kmafp/is_200705/ai_n19056364


And here it is... though I've never ever seen it on TV (I think this particular commercial was shown in Israel?). Might be a nice thing to link to on your site, Zen Archer:

http://www.youtube.com/watch?v=cCLitfxTdmg

...

[Steve100]

Seems 'Ted' is only interested in himself.

[hopingforcure]

someone made note of Augie's charity raising 175,000 on the 12th. And the lead singer of Five for Fighting John O. is a big ALS supporter.
On the Curt Shilling note, he even named his son Gehrig, he and his wife have been 2 of the biggest als supporters ever.
I think it is a shame that Ripken does not spend more time helping ALS, he really is not loud enough about the cause.. It is so frustrating...

[CindyM]

Steve- call the Senator's office and ask which die handles health issues. Then re-send your email to that person. THat person will take your request to the senator and together the staff and Senator will formulate a stance. If you want to make sure he takes your reguest seriously, let us know who the aide is who will be dealing with this issue and if a few other Massachusetts residents email the office, the issue will be given a higher priority.

In other words, this is one time when the squeaky wheel works.

Everybody is right, though. Senators and congresspeople do not usually handle their own emails. Their staff usually do that part. That's why it is a good idea to create "buzz" by having more htan one voter email the office.

[stevef]

ok i will call the office tomorrow and see who to talk to. Then I will let you know and you can email them also and see if we can find more people from massachusetts to do it

[ZenArcher]

That's my intent with the site. If those emails keep coming and from multiple constituents the staff will have it on their minds and it will get to the people that matter. I'm hoping the same holds true for the celeb talk shows and news programs. I'm in the process now of streamlining the email process. Its going much faster than I'd hoped but I've still got a lot to learn. If we can email on a monthly or perhaps every two week basis it will keep things in the forefront.

I've got a training class through Thursday but hopefully the nights in the hotel will give me time to hash some more of this out. In the meantime if anyone has letters that can be emailed by all for either General Awareness, Veterans Issues or to legislators please submit them using the Submit News link. Also get me email addresses to news programs, talk shows, etc. I haven't figured out how to automate others web forms yet so email address are better but if you've got a good one post it in the forum.

[juliesmile]

The fact of the matter is this is such a hopeless disease. We as people just aren't prepared to know what to say about something that is so totally fatal. At lease with Cancer and other "Bad things" there is something to fight, you can leave the conversation with well "Hang in there", "you can do this", "think positive". "A cure is just around the corner". I have found that people just don't have it in them to handle someone who is grappling with this disease. My husband isn't even diagnosed, and I fing people really don't know what to say to me. They are afraid I'm going to break down at any moment and they won't know how to handle it. So I find myself trying to make it easier for them by saying things like "Oh he's just fine. Nothing to worry about" when all I want to do is scream "Why!!!!What will I do with out him? Don't you get it, he's going to die a horrible death, and NO, I'm not O.K.!!!!!"

I'm so thankful for support groups. You guys get it. We can't expect the rest of the world to understand. That's why alcoholics have AA, Addicts have NA, Gamblers have GA. There is just something about talking to someone who's been there.

I am so thankful for this site and all those responding to my issues with true compassion.

Julie

[stevef]

I sent a letter to cnn so hopfully will here back but I doubt it. Not that autism is not important but they had something on it the other night and maybe they will do something for als. Everyone should go to CNN.com and email them to try and get things going

[ZenArcher]

Julie, ALS is a disease nothing more nothing less. Hope is a belief or personal choice. Don't confuse the two. ALS kills neurons, not hope.