What's wrong with the PD community?
 

I continue to wonder why the PD community (Fox, NPF, APDA, PDF, etc.) can't get their act together and create something like this:

http://www.youtube.com/watch?v=atKVaG4nIVo

We've got to change the thinking from "me" to "we". What's it going to take?

what's your opinion?
 

Todd - I couldn't agree more.

To everyone: What are your feelings about the fractured PD establishment? We have 7 (PDF, NPF, APDA, MJFF, PAN, Parkinson's Alliance, Parkinson's Institute) different organizations competing for money for research; they don't collaborate; they each have their own administrative overhead.

Do you think unity is a cause worth pursuing?

Your comments will be taken seriously, and will end up in the right hands.

Thank you!

Great video!
 

AMEN, Todd! It's been a while; I'll be anxious to see you in Atlanta and catch up on what's you've been doing.

You know why we can't do something like that cancer video and it be successful. I think it's bewcause there are too many organizations. there is ONE Cancer Society, ONE Alzheimer's Association, ONE Diabetes Association, etc. And I don't care what the PD orgs say, they ARE competing against each other.

So what do we do? I try to do something for all of the orgs, but that really stretches me and isn't really fair to anyone, including me.

I think this is where we need to put our "patient power." But how???

Peg

eeeeeek!
 

:eek:

Carey

I hit "send" just as you posted.

It scares me how much we think alike!

Peg

I couldn't agree more
 

Todd, Carey, Peg, and all,

Todd - what a great video!!!

Yes this fractured PD establishment only hurts us.

It has been so hard just promoting Karen Painter's PD Tulip for awareness for Parkinson's! When I made the youtube video for the Tulip, I stepped on many organizational "toes" because some were offended that I said that Pwp didn't have their own symbol. Well did we? If we did then, I sure didn't know about it. But I hope we do now.

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

And all I was trying to do was say: Let's work together. Let's use this symbol to represent us ALL. Let's set aside these arbitrary boundaries.

So whatever I can do to remedy this situation - sign me up! Let me know what I can do. ENOUGH! We need to work together.

And Carey, in addition to the 7 national orgs, Arizona has 4 state PD orgs. And how many in California? Or Washington? Sheesh!

:grouphug:

I confess to knowing little....
 

...of the national orgs and would like to ask what each is like. Organizations tend to become hidebound and self-perpetuating. I have no wish to take part in that. But sometimes they are lean and hungry and, even, aggressive.

So, tell me- Which ones are willing to upset apple carts? Which are oriented toward YOPD? If you want, you can PM me and I will just report the general flow in an anonymous manner.

I would answer that one privately [just speaking for myself tho] but I'm so glad to see this thread. Thank you Todd. Not only do they compete; they treat patients like high school and the brown nosers get the most reward. Some exclude regular patients completely and they DO NOT KNOW THE FACTS about the illness.

And the money? ........................... I'm not naming, those who do it will know who they are.

paula

how about...
 

....the next tier down? Smaller groups struggling to stay alive? Enlist a half dozen of them into an alliance and then approach one of the more likely top tier with a proposition. Core requirement would be that a majority of the Board of Directors be PWP.

I hate to say this.......
 

but there are a lot of non-PDer's living "high on the hog" at our expense. There is one well known organization that has 40% of its money going to "overhead". This is millions being spent to support 3-4 people. This is unconscienable!!

Charlie

Rick,

I imagine some will race to answer this one or else run the other way. The orgs are caught in the middle of a changing world where patients were largely excluded. Their boards can tie their hands. Once again, it depends on who the group is who is appealing for help - if it's not a popular one, the group will be ignored.

Just think on this a moment - none of the PD orgs acknowledge Monkeys in the Middle - who are they afraid of offending?

The orgs are changing and becoming more patient oriented. But you can see by what they ask of patients that they don't completely understand the illness. And gobs of their money also comes from pharmas and biotechs.

paula

Jean - you are kidding me that some people got upset about your tulip stuff! GRRR!

and Paula, I do a lot with PD advocacy but DO NOT consider myself a brown-noser (I looked in the mirror this morning - no sign) lol.

Everett - I don't think going with "the one who would most support YOPD" is the best way. That would fracture us even more. I think there is surely ONE group that could offer support for PWP no matter what their age. Neither would be wise for the majority of the board of directors be PWP. ; I'm afraid nothing would get done. And honestly, caregivers have much to contribute to our needs.

A few years back there WAS an effort to merge the PDF (New York) and the NPF (Florida) into one big org. That would have made one powerful group who would be able to tackle about anything. But alas, it fell by the wayside to politics.

But seriously, everette has some good strategies - would it be possible for a small group of PWP's to initiate change at that level?

Peg

OK, then, how about this....
 

How about an independent board of PWP who rate the organizations based on defined criteria and publicize the results annually and to the hilt? Maybe work in a sliding scale to recognize and encourage the process of change. And do it on a curve so that some group is always at 100% so that we don't alienate all of them.

Some criteria- Money raised. Overhead. Amnt to research. Ratio of the two. Some sort of innovation score. Pick the biggest venue each year and hold a press conference to announce the winner. Release the list and let the media figure out the losers.

as a matter of fact
 

Actually, there is a central event, Shake Rattle and Roll in Peoria next month. It's a fundraiser, and the researcher, Dr. Craig Cady, is very open to listening about new ways to collaborate.

It raises him approx 10+ k a year [someone holler if i am wrong] and he could use a lot more help, not always in terms of money, to move faster. With a group of open minded attendees from around the table, lots of things could be discussed.

Joan Snyder assures that the finest bands around are playing - it's casual and festive and no one has preconceived notions.

I've been giving this a lot of thought and will seek sponsorship for it.

so there is that wave length....

paula

haha Peg i'm editing to point out that i think along the line you became a brownnosee, not a brownnoser...lol....just kidding of course. That's the atmosphere I see tho....and i'm ready to move beyond.

Rick - I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me.

We've had very frank conversations about org fractionalization with PDF; they acknowlege it, tried to fix it a few years ago (as Peg stated above), but don't feel able to fix it now, or want to put energy into fixing it. There seems to be some collaboration in the offing about some research dollars, and the PDF does spend time thinking about whether or not they are duplicating efforts done by the other orgs when considering new initiatives.

It's a tough problem; I don't think that most of the orgs know or think of the level of patient frustration that exists.

Todd,
That was great... gave me chill bumps.

We have got to demand more than science as usual. The same old way of doing things just doesnt produce results.

See ya in Atlanta!

Good idea
 

Carey,

I like your idea about an independent patient advisory board!

quote from Carey: "I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me."

They have a web site, too:

http://www.standup2cancer.org/

They're asking for small donations, like $5. Katie Couric was on The View speaking about it.

We need a site like that, one that accepts PayPal. I won't give my credit card to anyone online, if I can help it.

Carey,

I like your idea. Everything I've ever been involved in through organization of any kind takes longer tho and this is the obstacle we always will face. Which isn't to say we don't need any organization, but as a friend said earlier tonight - you can make contacts and get to know people in the right places - forever. Allow yourself [rhetorical] some appreciation for what you've done, then move on and accomplish the real mission. which is new territory for patients.

If we wait for that magical invitation to the "table", I'm afraid we wait in vain. Its almost rhetorical. We need patients with money to form our own tables. The orgs should help.

We've been focusing on reputations. We need a list of those who have produced tangible results.

two more cents
paula

Paula - I agree a new org is the last thing we need. But we do need a way to capture the power and independence of the patient voice.

It shouldn't cost a lot of money; we can do it on the internet. We should not take any money from the orgs or wait or beg for their help; it needs to be independent.

We should look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff.

These organizations are there to serve Parkinson's. The patient is not always put first. The orgs are first beholden to their boards and to their funders; the patients come next. This does not mean that the orgs are bad; this is just the reality of organizations. If the boards are not happy, if they can't get funding, there will be no more organization.

The easiest thing to raise money for is research. With so many foundations courting money, it seems that the pool of cash must be splintered. Wouldn't it be better to have it all in one place? More coordinated; more collaborative?

And there needs to be more attention paid to the quality of life of those living today with PD. More emphasis on better care.

The orgs are doing a lot of good things for patients. But at what point does the presence of so many begin to stand in the way of real progress being made?

We need an unfiltered, independent platform for patients; the organizations shouldn't be afraid to hear what we have to say. The status quo is comfortable; they do not want to rock their collective boat!

grassroots
 

It's incredible how powerful and influential a grassroots effort can become. I stumbled across the term "e-advocacy" the other day. The power of the internet - using web pages and blogs and boards and email - is amazing. (And who knows what other tools/methods are out there that we haven't stumbled across?)

We could accomplish a lot. Margaret Mead's quote is right on...

Todd, thank you for resurrecting this very important issue. I'm sure everyone on this thread remembers how close all these national orgs came to uniting several years back, until the talks collapsed in the 11th hour, for reasons we as patients can only surmise.

The fact that these national orgs are labeled not-for-profit does not mean they are not businesses. They are in the business of amassing funds to support programs and services that improve the quality of life for PWP and their families and research that seeks improved treatments and a cure. As with any business, some orgs do their job more effectively and efficiently than others. This is my own common sense conclusion, not a hint that I have any knowledge of any of the orgs doing anything they shouldn't be doing.

Obviously, as a PWP, I am troubled by how much money I imagine is going to duplication of services. I also have this sense that the way our system functions, the national orgs have to serve many different masters (drug companies, government, patients, etc.), often with competing interests. Each of these "masters" is going to get the short end of the stick at one time or another.

Carey, I too have mulled the idea of having patient advocates "look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff." This can never happen, however, because ultimately the patients will lose if we go public with this sort of info. It will remain "a dirty little secret" because if we question how the orgs are using the funds they raise, big donors will be less likely to contribute, and then where will we be? We are between a rock and a hard place, just as we are when we have to choose a treatment course. Our lives and millions of others hang in the balance.

Sheryl

PD -Cancer -Diabetes etc. that get bigmoney from bigpharma
 

the big organizations get and crave money because they are owned by bigpharma!
the only PD organization - I will back will not take a dime from bigpharma -
and in doing so keep the organization from becoming the property of big pharma...
PRO - is the only parkinsons resource org. I would ever back.

I have seen the lavish money spent on the hotels and even went to a few, from the beginning of my advocacy in 2000 - 2004
and I saw the real people with hurting loved ones - giving big checks to
what? ---the cure? :eek:
well evidently it went for someones rolls royce payment?
I saw alot of doctors being wooed by gold, or the pharmaceutical gold standard?

tweaking meds? sounds like a Bull crapola reply?
we know better - :Tip-Hat:

Sheryl, I absolutely agree with you re:

"Carey, I too have mulled the idea of having patient advocates "look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff." This can never happen, however, because ultimately the patients will lose if we go public with this sort of info. It will remain "a dirty little secret" because if we question how the orgs are using the funds they raise, big donors will be less likely to contribute, and then where will we be? We are between a rock and a hard place, just as we are when we have to choose a treatment course. Our lives and millions of others hang in the balance."

And believe me, I thought twice about saying what I've said already in this thread in a public forum. But I think it is a conversation we should be having, and I'm glad Todd opened the dam.

However, I also believe that the orgs should not be publicly shamed with damaging information, or coerced into complying. It won't work, as you stated, and if it did, it is not a productive way to get what we want. Going public with unpleasant financial details is not the way to go. But it doesn't hurt for the orgs to know that we understand in a meaningful way that the current setup squanders money and our future, and that perhaps collaboration would be best for everyone. I'm wondering if the organizations know that patients are even thinking about this stuff.

I'm not advocating the destruction of anything, rather seeking to illuminate the situation, and thinking about ways to solve the problem fractionalization poses short of an actual merger. Ways they could be working together on a project by project basis to leverage their power on behalf of the patient.

I think the value of some sort of patient panel lies in its ability to articulate the needs of the orgs most important constituency. Our voice now is lost among all of the other power players. Although patient frustration is a negative emotion, it is what is motivating us to speak out. The result we seek, though, is positive action on all fronts from those who are already mobilized in our service - the organizations. I think it would be generally positive if patients who care about this and who are in a position to influence, start to have a conversation about what is possible. I think of it kind of as a constitutional right; freedom of assembly or some such nonsense.

But you are right; we've got to move that rock that's squeezing us in a manner that doesn't destroy. Hopefully it can be done with logical persuasion and good will. Am I too optimistic?

ok - let's imagine that all orgs stopped taking money from the drug development industry. Needless to say, much "work" would come to a halt.

Wouldn't it be interesting to see what "goes" and what "stays" in the orgs' priorities if that were to happen? Who would go and who would stay? Again, the world is changing. In the past, the sources of funding, and conflicts of interest were largely swept under the rug, and may have even been on the up and up.

That is clearly no longer the case. Losing our faith in the pharma industry is going to take along with it some of our faith in the orgs. Conflicts of interest, by itself, is not a dirty term. But I imagine that the conflicts of interest existing among pharma industry and orgs would at the very least raise a few eyebrows.

On the other hand - If Todd is going to ask about the pD community, that just doesn't mean orgs. The bottom line is there will be no progress without money. IF we don't take it from pharmas, we need other sources. I'm looking at the wealthy. And there it is - the same greed and lack of sharing.

But you can't hold patients to the same standard. We are NOT here by choice or to make money. You cannnot expect from a patient what you should expect from an org.

Carey I agree, the internet is the way to do this - patient run.

paula

This may not be the place, but . . .
 

Carey,, I'm with you 100% that shaming or even making public the downfalls of PD orgs won't answer any of our questions. By law the ogs have to make available to the public their annual budget (you ave to dig for it, but it's at each website).

You can tell a lot about an org by seeing how large its reserve is - if there are millions sitting there for "emergencies" or whatever, I feel that org is not living up to its potential. but that's MYU summation. Maybe the organization (for you Canadian's - organisation) has an explanation, and we should be open to listening.

So my suggestion is that 2-3 groups (not too large) with key contacts as membership, choose a not-for-profit and scrutinize its innermost workings. You could have a set of key questions and information to research, then come back together to share the strengths and weaknesses of each org. This should include the main focus of each org, which would be useful information in itself.

In my opinion we need to approach this not as "Let's see how much dirt we can dig up," but as to "What positives do each of the orgs offer." I think the fact that we are doing this and why should be told up front. Actually, it would be useful information for the administration of the orgs, also, and they would be more willing to provide such info.

I am not going to get into the big pharma money philosophy, but let me leave you with this thought. Just because I got paid state money to teach didn't mean that the state owned me, nor the Board of Education where I once worked. To be a non-profit takes a lot of red tape (government rules), and the orgs can't just "take" money from big pharma. Pharma has rules they must follow, also; like giving an org $20,000 for a grant for patient education. We need to be able to tap into the resources big pharma provides. That's where we can really make headway. If we get our act together and with the contacts we have made over the years, we can make more solid requests -- even demands - as to where that money is going. Big pharma money isn't evil, it just has never had anyone but its board and shareholders to hold it accountable.

My dad used to have the best advice that always rung true - "You have to spend money to make money," and most of us aren't having to pay the government back at the end of the year - if you catch my drift.

This is windy and being composed before my morning meds have kicked on big time, but I think we are onto something here. The plan should be not to criticize, but "share, learn,, and propose" (acronym SLAP lol - NOT serious) in an organized way, non-threatening manner - keeping friendly contacts.

Now who has the time and expertise to head up this effort and see what needs fixing and how we can help.

can we afford not to be optimistic
 

Carey, only time will tell whether you are too optimistic when you say,
"we've got to move that rock that's squeezing us in a manner that doesn't destroy. ...with logical persuasion and good will." One thing is for certain, if we don't try, it will NEVER happen.

It is my experience that people and organizations (made up of people) change only when they have a compelling reason to do so... the "what's in it for me" syndrome. Had the multiple orgs formed one last time around, many key people would have lost jobs, had income slashed, and lost power and prestige. What do we have to offer them to offset this? We need a business plan that spells out the benefits of what we want for all the groups involved.

The temporarily healthy, try as they may, will never understand the desperation of those of us living with a progressive, incurable disease... unless we happen to be their spouse, parent, child, etc. It is up to us to make our pain palpable to them rather than bear our burden in silence. Having patient advisory boards is great if they are consulted about issues that are really important and if their voice carries real weight. Rights are only meaningful if we exercise them and those in power are committed to defending them. This plays out in government every day.

Carey, the long and the short of my response is that patients cannot afford not to take our best shot, but we must tread carefully in the process.

sheryl

[QUOTE=pegleg;336689]Carey,, I'm with you 100% that shaming or even making public the downfalls of PD orgs won't answer any of our questions.

Just to clarify, I don't believe anyone here suggested or implied we should publicly shame the orgs. I know I specifically said that we maintain a curtain of silence because we cannot afford to cast doubt in the minds of big donors that their contributions are being well spent.

sheryl

Recently, in the Huffington Post, Katie Hood, MJFF CEO, called for agitators and idealists. Both are necessary and must respect each other. That means allowing it to be told "like it is".

The difference between not being owned by your employer and conducting a drug industry funded event is location -location- location.

paula

money talks
 

Peggy, you said, "Just because I got paid state money to teach didn't mean that the state owned me, nor the Board of Education where I once worked."

They may not have owned you, but you certainly had to teach a specific curriculum and am sure were well aware of those areas in which you could not deviate without being called on the carpet and facing some repercussions. And teachers without tenure are even more sensitive to this. There is no doubt that money talks... and can buy silence. It's never hard to find where the strings are attached.

sheryl

Sheryl, Yam1, Paula, et al
 

I understand where you are coming from. But laws and rules are a part of everything we do - EVERYTHING! I just feel that working "with" big pharma is more conducive to getting where we want to go t han working against them. (And yes, there are times we need to oslap hands publicly).

What if every time a trial was called off, our grassroots group had a team that would go in and inspect and investigate as to whether or not there was another way - and would make recommendations? I'm thiinking big, which we would have to build u p to - one step at a time.

is anyone following me or am I out on a limb alone?
Peg

From an agitator
 

I wrote the following paragraphs some time during the night and just woke up looking at it, so please forgive the lack of flow. Carey, much information about the orgs is right under our noses all over the internet. I've never minded compiling medical information for fellow PWPs with less internet experience than I have, nor is it necessarily bad for to know one's way around the philanthropic scene. But you have brought some things into focus for me.

I don't want to start one more org, but I have long espoused the publication of certain information about all organizations. I am the first to admit that I'm politically inept, more of an agitator, but nothing seems to have been improved by sitting on the information to keep peace in the family or to avoid scaring away potential donors. Not doing anything to hurt the family works for crime syndicates and racketeers, too, but they're still big thugs preying on little, frightened people. Maybe we need to get clearer on who's in the family and muster the courage to say so.

I don't know the answer to your question, Todd, but some of it has to do with the length of time we're sick. No, I don't think we have nasty personalities and can't get along. But think of this: the orgs seem primed to serve old people sitting in wheelchairs and drooling. Lots of parties and cheerfulness were the patient interface in the not-too-distant past. Now we have better treatments, and we're around for even longer, but the internet has brought us together and the orgs don't seem to know that yet. I'm sure they don't know how MAD we are (speaking for myself). So there's some hope.

We're sick for so long that advocates are in danger of corruption by the perks and privileges they have acquired, and they are in danger of despair that makes them forget that a cure or better treatment will really come.
They are then at peril for that first tweak of corruption, the staking out of turf. The more prominent they get--instead of using their contacts to bring in more PWPs to swell ranks--the danger is that they could begin guarding their information to maintain their own importance forgetting that we're in this to get well, not to get recognized. (Of course I'm basing my opinions here on theories and rumors; I don't personally know anyone with these negative characteristics.) When the time comes that an advocate's energy and cognition are waning, they should be passing along their knowledge to an eager new wave of advocates, and like Moses, be glad that "the children of Israel" want to "prophesy" (tell i like it is).. The best are grooming their replacements right from the start. So there are some of the dangers, not that I've named them astutely. I'm on the wane, for sure. I like it here behind the scenes, and I apologize if I've mis-analyzed the situation.

Another thought: if some money is scared away, other money will be attracted. Peg, yes, it takes money to make money, but nobody wanted to invest the 30 pieces of silver. Just something to think about.

There should be focus groups of patients everywhere. OSHU PD Center uses them. I don't know much more about them than that.

There should be a guide to Centers of Excellence with patient analysis of their effectiveness. Perhaps a page on Angie's List?

There should be an Office of Cures at NIH.

And I'm grumpy from feeling the effects of drug withdrawal on my third day without KW6002--after the halted trials of another beneficial drug.

Jaye

And no, Peg, you are not out on a limb alone. There are a lot of ideas here, and all we have to do at this minute is to accept the diversity of ideas and respect the people who wrote them. Next we hope for creative synthesis...

Peggy - I don't think you are out on a limb. I think we have to cooperate with all of the current players. The question is how do we play / how do we leverage our strength as a player?

No one has spoken to this part of my above post:

"I think the value of some sort of patient panel lies in its ability to articulate the needs of the orgs most important constituency. Our voice now is lost among all of the other power players. Although patient frustration is a negative emotion, it is what is motivating us to speak out. The result we seek, though, is positive action on all fronts from those who are already mobilized in our service - the organizations. I think it would be generally positive if patients who care about this and who are in a position to influence, start to have a conversation about what is possible"

In other words, would we have more power if we were consolidated along with serving as individuals holding positions on various advisory boards? We want the pharma investment, - how do we influence how the money gets spent? Right now it's spent on our behalf without our input.

Speaking to Todd's original question: what can the patients do to change the org culture from "me" to "we"?

One thing is becoming clear from the above - as individual patients, we are intimidated into compliance by the status quo. Is that really how it should be?

It might be interesting to look at the experience of the gay community and their struggle to get society to deal with AIDS. A place to begin is Wikipedia's entry on the book "And the Band Played On." One thing they learned is that being nice gets you a good eulogy.

Organizations exist first to perpetuate themselves. Allowing patients within the walls is not high on their list. This is doubly so when staff runs the show as is often the case.

Don't be afraid to embarrass someone so long as you are simultaneously praising someone else.

Here is a good site that rates non-profits-
http://www.charitynavigator.org/inde...search.results

Peg,

I do not think you are alone in saying we must work with pharmas. It's a matter of where the dollars go. Much of it is not being spent on R & D. We aren't seeing results. I do understand your point about collaboration.

:) paula

not alone on tha limb
 

Peg what a terrific idea.

Peg said: "What if every time a trial was called off, our grassroots group had a team that would go in and inspect and investigate as to whether or not there was another way - and would make recommendations? I'm thinking big, which we would have to build up to - one step at a time."

There are so many thoughtful ideas in this thread. But does anyone here have the energy or the time to actually move forward on these ideas? (I know people have the talents and knowledge and skills)

(Let it evolve)
 

(Jean, my feeling is that we are rolling on idea-generation and might be jumping too soon if we attempt closure. Allowing time for synthesis--better ideas coming from the early suggestions--was an important step in the design process when I was learning problem-solving in architecture school. Just my own view.)

(Jaye)

(Oh yeah, and this thread was only started at 4:30 yesterday afternoon. Some people are still employed--although it's really really hard for me to remember what that's like, or live on some other continent, or need to repair their computers today, or.... :D )

Jean - you are so right re:

"There are so many thoughtful ideas in this thread. But does anyone here have the energy or the time to actually move forward on these ideas? (I know people have the talents and knowledge and skills)"

my answer is, "no, I don't have the energy. But is it time for me to do it anyway?"

At some point aren't "they" counting on our lack of energy to remain divided and mute?

When I was a very small girl, my mother used to sing the jingle from a product called "Carey Salt." It was "Carey, carey, carey, you're so revolutionary." I guess my agitator-idealist side is showing!

good point
 

Jaye - good point - to let it evolve - I can accept that. :o

I just blurted out (in print) what I was thinking....

Carey - you go girl!!

shift balance of power
 

Peggy, of course we have to work with all stakeholders, but the time has come for the balance of power to shift. Patients are the customers of the orgs and pharmas and the customer's needs should always come first if a business wants to be successful.

Off to Iowa. will try checking in tonight from the hotel.

sheryl

Yesterday I spoke about Parkinson's disease to a Kineseology (sp?) class at Arizona State.

As part of my presentation, I mentioned promising treatments that had ultimately failed in clinical trials:

• GDNF
• SPHERAMINE
• KW6002

These were treatments that I KNEW had worked for some pwp, but had still ultimately failed in the trials. I ultimately broke down and wept as the class asked me questions.

Some time ago I had given up on there being a cure in my lifetime, but now I am rapidly losing hope for getting new treatments.

I write this because the topic and discussion are important to us and all pwp.

We can make a difference.