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Kay Marie, I understand the frustration that comes with this disease -and how uneducated we are in the area of ALS until we are living with it. I don't disagree that MDA and ALSA should be allocating their funds in a more equitable manner, giving all the motor neuron diseases their fair share. However, maybe they are, without further investigation and study I wonder if the petition is the way to go. Maybe it is.

I am much too new to this disease and the forum to understand the political and burecratical structure to know "what is what." I too live in a "remote" community in South Dakota and have found the ALS Clinic in Rapid City helpful and responsive to my needs. I might be wrong, you probably know better than me, I assume this is a part of ALSA or MDA or both?

I do know that this forum and the people I have met on it have been a blessing to me, and while I don't always agree with some of the posts, I respect peoples' right to express themselves. I am disappointed to see many people who I found helpful and inspirational, leave the forum and go to Facebook. The ability to research old threads on this forum is priceless to me. I have been a Facebook member for some time and am not comfortable posting personal concerns or thoughts there.

I also have seen the wonderful things that Stu and his ALS Guardian Angels can, and are, doing for PALS and CALS. And, as you know I am a supporter and have begun to educate the local community about the disease and Stu's Foundation.

As an ex-CEO of a national non-profit, I know that petitions rarely bring change. Instead they cause a splitting of the base group and a splintering of funds, resulting in no group having the ability to do much good. Is there an ALS patient or a CALS on the board of directors of ALSA or MDA? Who sits on the board at the National level? Who is on the board of Guardian Angels? How does this forum operate? I get the sense it was started in Canada? How is their natonal organization different?

I still have too many unknowns to research before I can support a petition that finds fault with the existing organizations and does not specify or include positive suggestions for change.

At a glance, it comes to getting support for your cause from board members who set the national agenda and have the fiduciary responsibility for how funds are spent.

Bare with me dear friend, stress is not good for any of us, and "let's not throw the baby out with the bath water"- look for the good and keep it. This forum and those who monitor and keep it running are GREAT - This is a foundation to build on -Start a thread with the positive ways to improve the national organization and then put it into a presentation and request an opportunity to meet with the board. Then they might listen.

We need to work together... not split apart and start yet another group.

Hugs to all and a special blessing to those who are in angst.

Diane
 
Paul (edge77)

I would like to hear what it is your brother, Dan, has told you regarding how Lou Gehrig and others got and get ALS. With his knowledge of such things, I could perhaps avoid going from a ddiagnosed of PLS to one of ALS.

I'm thrilled to no end at this prospect!

Please, tell us more!

Zaphoon
 
I have been a Registered Nurse since the early 1980's, worked all across the USA in every medical speciality that you could imagine and I NEVER ONCE had a ALS pt nor were we taught about ALS in Nursing School or in any continuing Ed. I can honestly say that until Web was diagnosed, the only thing that I had ever heard about ALS was that Lou Gehrig died from it. My point being that there is absolutely no PUBLIC AWARENESS or education. Is that not what ALSA and MDA and all of these other organizations should be doing? You need to be on our team and help us.

Kay Marie,

For the first 14 years of my working career, I worked in an industry whose trade association is one of those groups that presents multiple seven-figure checks to Jerry Lewis every Labor Day. If I look back and total up how much money that the stores I worked in raised for MDA during that time, I can feel confident that my colleagues in those stores and I have by far "paid forward" the value of the MDA resources I'm drawing upon today.

Even after I left that industry, my wife and I continued to donate money to MDA. Heck, I've watched at least two or three hours of the MDA telethon every year for 38 years. That's right -- 38 years.

I remember hearing the death announcements for David Niven and Dennis Day, for Charlie Mingus and General Maxwell Taylor. I remember seeing US Senator Jacob Javits rolling across the stage in his power wheelchair in the early ’80s. And I remember seeing film of Jim "Catfish" Hunter, the great postseason pitching ace of the Oakland A's and the New York Yankees, struggling to throw out the first pitch with his withered arm at a game in Yankee Stadium. The news that the great Catfish had died of injuries suffered when he fell off the front porch of his home was front page news here in my hometown, and the ALSA chapter that bears his name is the one that serves me.

The information about ALS was out there, for literally decades, for anyone who wanted to know it.

Frankly, KM, I'm familiar with some of the loudmouths in that crew and I'm not particularly impressed with what I've seen. They spend the overwhelming majority of their time trashing the existing organizations and promising that things will be so much better for PALS if we just do things their way. Sort of like a certain politician that advertised hope and change without a track record in either (and how's that working out for everybody?). I spent too many years listening to vaporware claims in the software business to put any stock in folks with slick Powerpoints and poisonous talk about rivals in their field.

So my response to "you need to be on our team and help us" is "Your team? How about y'all pitching in with the ones who've been tending to the knitting before you even knew that there was a ball of yarn?" And, when one jumps on a bandwagon as it passes you, it's awfully presumptuous and downright rude to insist that the driver be changed to suit you.

Once again, KM, I love ya to death, but we'll have to agree to disagree on this one.
 
Diane and Allen,
I love both of you so much and I do appreciate your input! Respectful dialogue is always a good thing. That is how we learn. I am not chastising or attacking anyone. Allen, I wonder why it feels like you are attacking me personally? Are you? I honestly know that you are not but it does read that way. Why was it necessary to quote my professional status in that manner. I was only telling you my truth about the horrible lack of Public and Medical awareness of this horrible disease. The old saying, "One never becomes politically active until it becomes personal" is so true for most of us in this world. I personally could be the poster child for that saying! You know that I am only trying to find answers. I truly do not see how these organizations/Government are assisting us in measurable ways with the money that is funded and donated to them. Is it wrong to question? Is it politically incorrect to demand accountability and representation? I have no old history with any of those people so I can only go with what I know today :] Can we agree that change is needed? I did not mean that it was my organization or that you had to participate. I meant that you have a wealth of information that would be helpful in cutting through the BS. xo

Diane, such insightful comments! To my knowledge, no one that sits on the boards for ALSA is a PALS or a CALS. I do believe that is a part of the problem. Most organizations are very much Paternalistic and are not in a position to "know" what it is that is needed by the individuals that their organization was created to assist and they do not ask. I think that ALSGA is basically a one man organization. I guess that I need to research those facts to be certain. There is NO ALSA chapter in South Dakota. I would guess that the only reason that you have a ALS CLinic in Rapid City is due to the hospital and there still may be some funding from MDA. There is a MDA in South Dakota. What happens to all of the PALS that do not live in Rapid City or Sioux Falls? What happens to all of the PALS that happen to reside in a state or an area that ALS or MDA does not serve? What I would love to see is that these organizations would cooperate with one another in a true spirit of making a change! You are so correct, we certainly do not need another group or nonprofit, we just need the ones already in place to work together cooperatively and actually do what they say they are doing in their mission statements. I find it rather alarming to see that drug companies sit on the boards of the organizations or are major contributers to the same organizations that are researching for a cure and where the HELL is that cure after all of these years? It just feels self serving to me, like a vested interest and nepotism. My big questions are they REALLY assisting us, do they REALLY have our best interests at heart, are our specific needs taken in to account, are we actually represented, is there any accountability? I am learning to knit one, purl two.
With courage, grace and love from the Prairie this cool morning,
Kay Marie
 
Allen, I wonder why it feels like you are attacking me personally? Are you? I honestly know that you are not but it does read that way.

No, Kay Marie, I'm not attacking you and I'm sorry you feel that way. I've been having this discussion at various sites with various people over the past two years, so I've developed arguments over that time that come to mind when the subject comes up. If my presentation of those arguments came off a bit too strong, I do apologize.

Why was it necessary to quote my professional status in that manner. I was only telling you my truth about the horrible lack of Public and Medical awareness of this horrible disease. The old saying, "One never becomes politically active until it becomes personal" is so true for most of us in this world. I personally could be the poster child for that saying! You know that I am only trying to find answers.

The main reason I started quoting you at that point is because that was the beginning of the things you had addressed directly to me in that post. The part of your post immediately prior to where I started quoting was you quoting what I had said in an earlier post. So there wasn't any attempt to take anything out of context; I simply picked up the whole chunk of your new content and quoted it at once.

However, in the beginning of that quote, you did appear to use your professional status and your lack of knowledge about ALS until Web was diagnosed as an example of what you think is poor public awareness efforts on the part of ALSA and MDA. The implication was that, if even medical professionals don't know about this disease, ALSA and MDA are really doing a bad job. Is that what you meant to say? If so, I strongly disagree.

I spent the majority of my previous post either listing places where ALS was in the news or demonstrating activities where MDA is raising funds and promoting public awareness of the various neuromuscular diseases it is pledged to battle. And I used examples going back nearly thirty years to demonstrate how long MDA has been on the job. Did you know that Lou Gehrig's widow was heavily involved with MDA from the very beginning, nearly sixty years ago? Jerry Lewis' involvement with MDA goes back over 50 years. For the past several years, Augie and Lynne Nieto have played an increasing role in the Labor Day telethon, making multiple appearances onstage with Jerry Lewis during the show.

You say you are trying to find answers. I'm suggesting that the answers that you appear to have come up with so far, based on the people and opinions you are choosing to endorse, are incomplete and misleading. There was an ALS world before you and Web joined it. A lot of the people in that world did and are doing the best they could with what resources and support they had for a lot of years while you remained unaware. Don't they at least deserve a pat on the back for the good that they've done and the honor of their intent before you start wagging fingers at them for not doing more?

I truly do not see how these organizations/Government are assisting us in measurable ways with the money that is funded and donated to them. Is it wrong to question? Is it politically incorrect to demand accountability and representation? I have no old history with any of those people so I can only go with what I know today :] Can we agree that change is needed? .

Just because you don't see it doesn't mean it isn't there. And nothing is requiring you to go the direction you appear to be going without gathering all the facts either. That's a choice you are making.

No organization can do everything for everybody. Each organization sets its activity priorities based on a variety of criteria, which would include perceived need, available resources, time required to complete, etc. The organization's prioritization of those factors will probably not match your own personal prioritization of those factors.

What I'm hearing from you and others I know on that petition is that the difference between the organizations' priorities and your own personal priorities means that the organization doesn't care about PALS and they should all be replaced. I say: show me the evidence to support your claims and, more importantly, how is doing things your way going to make things better for us?

Define what you mean when you say "change". What do you mean by "measurable?" What are "accountability" and "representation?" And what makes you think that you have the right to "demand" anything, and which groups does that apply to?

Answer those questions I just posed and we'll see if we agree on anything concerning change. All those words sound noble, but nowadays they're just cheap buzzwords for those who want power. We're supposed to respond to the nobility and ignore the petty grubbing for advantage hidden behind the noble facade. Maybe I'm too cynical in my old age, but every time I hear that kind of language, my first response is "Sounds good, but what do you have up your other sleeve?"

One other point: In my opinion, we need to distinguish carefully the strategies we use in dealing with MDA and ALSA and those we use when dealing with the various levels of government. I sense a bit of commingling going on here that blurs the distinctions between private organizations and public institutions. If we are going to make the private organizations our face to the government, then we have to support those organizations and participate in them with appropriate zeal and effort. How do you expect government officials to take the organizations seriously when there is very public sniping going on behind the backs of those organizations? You're just begging to hear "Why don't you folks come back when you've figured out what you really want?" when there is this kind of turmoil in the background all the time.

I did not mean that it was my organization or that you had to participate. I meant that you have a wealth of information that would be helpful in cutting through the BS. xo

From my point of view, cutting through the BS and helping you is pointing out the weak spots in your arguments and the venality of some of the people you are choosing to ally with. Show me where I'm wrong and I'll be happy to join with you.

As I said before, this is not meant as a personal attack on you. I accept the honor of your intent and I hope you do the same for me. This is simply a disagreement between friends. I honestly believe that if you knew what I know about MDA and what Jeff (ZenArcher) knows about ALSA, your opinions would likely be different.
 
Allen, wonderfully said and now I am challenged to find the information to sway your opinion! [I am smiling and blowing you kisses my friend] I love having debates with you! I do know that you were not being mean to me, I thought that it was a good opportunity to show other people that you are truly a sweetheart even though your words sound harsh at times! xo
 
In Nevada, we have ALS of Nevada, which is not affiliated with the national group. They used to be, but the fees they charged to belong were too high for the benefit they received for PALS in Nevada, so they are doing it on there own. They are in really bad financial shape now, so much so that they had to let there 2 patient advocates go last month. We do have an ALS clinic here in Reno, but it is small and not very effective. They helped us in the beginning, but after reading here about other clinics, I realized we could do better at another clinic. We went to Forbes Norris in San Fran yesterday, and was amazed. This was not a clinic day, just our initial visit, and we were there for 3 and a half hours. We go back for clinic in a month. There is a closer clinic in Sacramento, but it is also small and understaffed. The 4 to 5 hour drive will be worth our time. Not all clinics are the same, and not all ALS groups are the same. We are lucky that we are able to travel there, but come winter time we will not be able to go due to the snow between Reno and San Fran. We could have gotten in to Ceftriaxone trial, but commitment is for a year, and the roads are to dangerous in the winter to travel, so we had to pass. The traffic in San Fran was crazy, so glad to be back home. I would love to be closer to a great clinic, but would not live there for anything! HUGS Lori
 
I don't have the energy for such an articulate response today so I will ask a simple question. If you have a hang-nail do you cut your arm off? Why then when the issue is centered around awareness should the entire organization be attacked?
 
Jeff, eloquent post! I like the analogy.

Allen, you have presented another side that is based on "factual" questions and makes good sense and gives me a "newby" to this forum and disease much needed information. I was not totally unaware of ALS before my diagnosis - the Jerry Lewis Telethon was as traditional in my home growing up as was the Rose Bowl Parade. Then I had a neighbor whose husband had the disease for the whole time we lived next door (11 years) and I witnessed his progression. My husband also had a friend from his AF days who died just 3 months after receiving an ALS diagnosis.

My ignorance is more on the organiztional side - I guess I have always assumed that MDA and ALS were formed to find a cure - and not to necessarily provide patient care or assistance. I need to do more digging and educate myself better.

Thanks.

Diane
 
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I figured out how to fix it!

We get Lindsey Lohan as a spokesperson with the tag line, "ALS, a downward spiral even worse than mine."

:twisted:
 
Good one, Jeff! There are several other celebs that could pitch in! LOL
 
So true a lot of the Hollywood bunch could use a reality check..
 
Jeff, LOVE IT!
 
Wow! I admire you all for your energy and determination and your fight.
WOw!
I just keep thnking that I do NOT understand why there is not an international formula that everyone with ALS could fill out that cross-checking by millions - possible in this digital age - might find out the link so far missed. Why is something so "simple" not done? We could help direct the questions - the very questions that come up here again and again - is it associated with this, or that or the other, which we as sufferers in the past experienced. Could not your team, darling old fogey, create such a formula with either yes/no answers or scaled answers that could be easily matched? I suppose I am over simplifying, but I 'd have thought this was the kind of thing a big assoc like ALSA could have got sorted.
But admit much much ignorance..........
Love to all
 
Irismarie-
I've been wondering about that too. Why hasn't somebody asked for a detailed personal history on me or any of us? Is there a research effort along those lines I don't know about?
 
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