[indigogo]

On November 10 and 11, I will be attending the MJFF Patient Council Meeting.

What questions or ideas of yours can I bring with me? Just by posting them here in this thread you can be sure they will be seen by Debi Brooks and other MJFF staff. Or you can PM suggestions to me, and I will be sure to forward them.

To give you some context, here are the general topics (draft) I have received for the meeting:

Status of PD science and MJFF's role
MJFF research vision and how to communicate that vision
How to engage patients in a digital world
Clinical trial services including PPMI, Fox Trial Finder, and recruitment strategies
Brainstorming for the future

Debi Brooks and Todd Sherer will be presenting along with several other MJFF staff. We also will meet with members of the Executive Scientific Advisory Board.

I will report back after the meeting. Thanks for your input!

[moondaughter]

Originally Posted by indigogo

On November 10 and 11, I will be attending the MJFF Patient Council Meeting.

What questions or ideas of yours can I bring with me? Just by posting them here in this thread you can be sure they will be seen by Debi Brooks and other MJFF staff. Or you can PM suggestions to me, and I will be sure to forward them.

To give you some context, here are the general topics (draft) I have received for the meeting:

Status of PD science and MJFF's role
MJFF research vision and how to communicate that vision
How to engage patients in a digital world
Clinical trial services including PPMI, Fox Trial Finder, and recruitment strategies
Brainstorming for the future

Debi Brooks and Todd Sherer will be presenting along with several other MJFF staff. We also will meet with members of the Executive Scientific Advisory Board.

I will report back after the meeting. Thanks for your input!

Thanks for this invitation Carey!

My feeling is that as long as the science of medicine is divorced from the spirit of medicine there will always be an x factor creating a chasm that can only be bridged with love.
So. I would suggest that a whole new paradigm be introduced with speakers like Dr. Bruce Lipton ( http://www.youtube.com/watch?v=4iCcnDuY6-4 ), neuros who have experience with PD and ayahuasca....yes...the use of amazonian plants that facilitate a change in consciousness as a venue in healing.
just my two .....
md

[indigogo]

MD -

The reason I started this thread was because of the conversation you were having under the topic "Wondering." http://neurotalk.psychcentral.com/thread159111.html

Do you think this is how you would capture the concern and ask the question:

Has MJFF become too conventional? Does their success at dominating and influencing the traditional medical research paradigm, including how projects are selected and funded, mean they are no longer really able to think and act innovatively? Can they move beyond the MJFF paradigm to continually push boundaries? Can they break with their own traditions and model? Or are they too wedded to the existing research-pharma-corporate system to be truly visionary?

My conversations with them lead me to believe that they want to be, but are often constrained by the very system they are trying to challenge. They are bound by legal restrictions regarding confidentiality and proprietary information, stymied by industry and government rules and regulations.

Which regulations are needed for legitimate consumer protection? Which ones exist to protect business interests? How do they make their way through the mine field intact? Is it their job to explode systems or be nuanced and smart enough to utilize and exploit those systems to our benefit?

I've learned that things are more complex than I would like them to be (sometimes they simply can't comment in public). My hope is that they don't allow the system to wear them down; that they are always seeking to find a new way through, while retaining their power, credibility, and integrity.

It's a good question - one worth talking about - and one that I hope they are asking themselves. And I guess I am asking it now!

[moondaughter]

Originally Posted by indigogo

MD -

The reason I started this thread was because of the conversation you were having under the topic "Wondering." http://neurotalk.psychcentral.com/thread159111.html

Do you think this is how you would capture the concern and ask the question:

Has MJFF become too conventional? Does their success at dominating and influencing the traditional medical research paradigm, including how projects are selected and funded, mean they are no longer really able to think and act innovatively? Can they move beyond the MJFF paradigm to continually push boundaries? Can they break with their own traditions and model? Or are they too wedded to the existing research-pharma-corporate system to be truly visionary?

My conversations with them lead me to believe that they want to be, but are often constrained by the very system they are trying to challenge. They are bound by legal restrictions regarding confidentiality and proprietary information, stymied by industry and government rules and regulations.

Which regulations are needed for legitimate consumer protection? Which ones exist to protect business interests? How do they make their way through the mine field intact? Is it their job to explode systems or be nuanced and smart enough to utilize and exploit those systems to our benefit?

I've learned that things are more complex than I would like them to be (sometimes they simply can't comment in public). My hope is that they don't allow the system to wear them down; that they are always seeking to find a new way through, while retaining their power, credibility, and integrity.

It's a good question - one worth talking about - and one that I hope they are asking themselves. And I guess I am asking it now!

A big YES to that Carey. Very eloquently articulated indeed!

I believe at the heart of this dilemma lies the question of how can we be both competitive and cooperative at once. Can we create new answers with the same old tools? I can think of good research already done that could have a deep and positive impact on peoples lives with more funding.

What is the best way to serve the whole pd population as well as the individual pder?

I would propose focusing on the treatments that helps us feel better even if just step by step. There inlies true power, credibility, and integrity. All the $$ that go for expensive protocol might be better placed just helping PWP on a daily basis now.

Also I am wondering if the MJFF is exploring research done in other countries?

Thanks for listening Carey - Bravo!
MD

[lindylanka]

Cooperative is the word that hit me from MD's post. That is what patients would like, that orgs would work cooperatively with them. It is fine working with what they are doing now, and has come a very long way, but it is time to understand the international dimension to PD, that there are no borders. As yet most orgs do not bring patients to the table, or only in a fairly nominal way. I would like to see some of the boundaries come down, and patients brought in from the cold. MJFF could do this, given the will to do so.

[paula_w]

focus on cell replacement. stay away from embryonic and use our skin, go full throttle.

[indigogo]

Originally Posted by paula_w

focus on cell replacement. stay away from embryonic and use our skin, go full throttle.

What do you think about gene transfers and trophic factors?

[paula_w]

Originally Posted by indigogo

What do you think about gene transfers and trophic factors?

i don't know and no longer have time to find out; but there will be no growth if there are no cells. staying away from embryonic it is faster, you don't have to fight with what valuable energy we have. throw it all at basic research and autologous cell replacement.

we are weakening the human race, destroying our immune systems. we need to concentrate in what our body can do to itself. it just feels more right and possible.

if there is a stage 1 gdnf with no placebo i''d think about it because it's known it didn't have side effects. but who even studied them to see if it worked long term?
it's at the holding each other up stage for some of us, research money is wasted , not intentionally, but we need a focus.
rethinking i guess i would add: we need both growth factors and stem cells.

[indigogo]

Originally Posted by paula_w

i don't know and no longer have time to find out; but there will be no growth if there are no cells. staying away from embryonic it is faster, you don't have to fight with what valuable energy we have. throw it all at basic research and autologous cell replacement.

we are weakening the human race, destroying our immune systems. we need to concentrate in what our body can do to itself. it just feels more right and possible.

if there is a stage 1 gdnf with no placebo i''d think about it because it's known it didn't have side effects. but who even studied them to see if it worked long term?
it's at the holding each other up stage for some of us, research money is wasted , not intentionally, but we need a focus.

It does feel scattered, doesn't it? Because we still don't know what we are dealing with. I'm a huge proponent of MJFF's PPMI study that will follow newbies over 5 years to track progression and take biological samples to get a better grip on what we are dealing with - but FIVE YEARS?

I really get the impression that MJFF focuses as much as it can; cell regeneration is a part of their portfolio. But it doesn't hurt to talk about focusing on focusing!

Did you see the sentence in the joint statement about Azilect that addressed the fact that PD is multi-faceted, so that new treatments should be approved even if they don't help ALL people with PD? A step in the right direction!

[moondaughter]

[QUOTE=indigogo;816064]It does feel scattered, doesn't it? Because we still don't know what we are dealing with.


Instead of looking for "a" "cure" for pd why not view pd AS the cure....our body IS languaging to us that we are out of balance and if we listen the signature of our illness, it tells us where we need to ..........focus.

For example...the adrenal overload tells us to relax our anxious habits of thinking and reacting, our inability to move tells us to surrender...that we are not in control, etc. etc. etc. Complicating this perspective however is the cultural influence which our collective subconscious holds sway through each and all of us. we really do need to drop the boundaries as Lindylanka says!

For example, what of the "hundredth monkey effect"? Have you heard of the meditation experiments done that dropped the crime rate in the mideast over 30% for a whole week? then there is the Global Consciousness Project...(http://www.global-mind.org/) what if the FF did a sort of cure PD version of that! create a database that would receive input from PWP...invest 10 million dollars in 10,000 PWP in integrative therapies of their choice including massage therapy, nutrition counseling, homeopathy, sound therapy, movement therapy, neuromuscular dentistry, cranial sacral osteopathy, transcranial electromagnetic stimulation, penduncle surgery, etc. signing with a caveat of total personal responsibility and release of liability....then see if just maybe not only might there be a few of these folks that actually reverse sx but their relief would be experienced by the whole pd community....a sort of giant first chakra experiment -

I'm saying that shifting a cultural perception could have a profound influence and merely helping people feel better increases more people feeling better...theres focus for you - focus on the journey i say.

what if like alcolholism pd can only be managed-not obliterated..and that is not to say that sx can't be dealt with well but that nature dictates a sort of spiral dance - round and round we go...

md