Peg and i attended the BIO international conference in Chicago this week. It was attended by 15,000 researchers and related businesses. We represented pdtrials.org but there are few patients there so we really end up talking about their ideas [one man want to start a non profit treatment dev company] what all the orgs were about and answer their questions. they discover how much we know and everybody goes away learning something.

This year there was a man waiting in the morning for us. He was a researcher from Switzerland whose father in law has pd. he is working with gangliosides and was surprised that i knew a little about them.

peg directly asked them if they were going to have patients on their boards and they said yes. They were not happy with pharmas.

Well i have to say that we are quite a site. Peg staggers and crashes into me and we both are quite unstable and appear drunk. peg falls backwards and i pitch forward. My daughter, who is almost 25 went for the second time and i gotta admit she is a looker. we don't wear the standard black business suits - we are patients. with colorful clothes and our drunken looking stagger, tripping, heads swaying and my inaudible mumbling and lips squeezed in, along with my daughter , especially her, cause almost every man to do double takes. You know how booths attract people with candy and trinkets -well we didn't need any...lol

She points out to me that guys always do double takes at any girl under 30. But to her mother, it's sheer hysteria to see a guy walk forward with his eyes looking to the side.

ok enough of that.In the meantime, we all learn something.

Tues at lunch we listened to CEO Jim Greenwood sit down with pres. bill clinton and George Bush jr. THey are good friends and have started a real drive to rebuild Haiti.We listened for an hour. Bodyguards everywhere and thousands of people. We were sitting at VIP table #1.

We are letting our symptoms hang out. BIOS motto is "heal, feed and fuel the world." We let them focus on why they are there. We are making friends.

More tomorrow. Bill and George were themselves, relaxed, but i don't know about clinton - he has that tight look, and a tremor.

on wednesday it was al gore. we are blessed.
more later exhausted beyond description

BIG THANKS TO YOU AND PEG FOR BEING AT THIS CONFERENCE. and for sharing your experiences/information. madelyn

(I really can spell "continuiing," but it's those doggone dragging fingers GRRR)
BIO (Biotechnology Industry Organization) is the world's largest biotechnology organization -- with more than 1200 members worldwide. This is the third time Paula and I have attended, and we feel it is one of the best sources of networking with those actively involved with research and development.

When I say "networking," I don't mean just walking by a big pharma company's exhibit booth and picking up a business card, I mean we are right in the conversations with top researchers (and we're pretty darn good at it - right paula?) No, we're not discussing the statistical analysis of a study or its design, but we are helping them to see the patient perspective in the business (marketing) aspect of drug development (areas such as clinical trial recruitment and funding). This year there were researchers lined up to talk with us!

Like the book we are writing (by the group known as Parkinson's Creative Collective), we are not only building Parkinson's awareness, but are helping approval agencies, trial sponsors, researchers and others realize that empowerment of the patient is a wise investment. BIO understands - organize one evening social event for CEO's and patients to intermingle.

It's not the easiest thing for us to get to these meetings, usually requiring a week of recuperation after one, but it's worth every minute. (and Paula and her daughter are a lot of fun!) After all, they have told me twice that the cure would be here "in 5 more years." I'm not a rocket scientist, but we are already running a decade in arrears!

The conference ended Thursday so Peg and i had to leave early to catch flights and were replaced by Frances, who coincidentally is the same Frances who posted here about her genetic cholinesterase inhibitor dysfunction that paralyzes her if they use a certain chemical in surgical anesthesia. She and her husband live outside of Chicago. Frances attended the Clinical Research Learning Institute.

there's always a new connection,
paula

First, thank you Paula & Peg for doing what you do so well.
Second, a bit personal and you can respond by email if you like, how do you afford to travel to all these meetings and conferences? With a family, I can hardly afford to put gas in the car let alone fly to Chicago and spend a couple of nights.

GregD

We are sponsored by PDF - the Parkinson Disease Foundation, which funds the Pipeline Project and the CRLI Institute. BIO gives them complimentary passes. We earn this while we are there tho, we work the whole time - even at receptions in the evening people talk business. My daughter paid her own flight with some help from me. PDF gives her a pass and covers her meals...actually breakfast , most food is at BIO....pass is free to them..and really that comes from BIO. [BIO pass costs thousands.] She stays with us in our hotel room that is PDF paid for and she has come twice because we are unable to go safely without someone to help. She works the exhibits too.

I don't mind telling you this - if you are wondering others could be. The organizations can afford this. I am so very grateful for their sponsorship, but they schedule us to fly and work the same day; hard enough for a healthy person. I do not want to look a gift horse in the mouth [is that the way it's said?], but I do want pwps to understand that this is a terrific opportunity but we work hard, and are utterly exhausted when we get back. If i hadn't been in physical therapy before I went, I wouldn't have made it.

paula

GregD
That is an EXCELLENT question. Most of our travels are funded because we are advocates under the umbrella of PDF (Parkinson's Disease Foundation). If we don't exhibit materials for PDTrials.org, then we are presenting, serving on a panel, etc.

As part of the Pipeline Project (which is a grassroots effort), PDF has supported patient advocacy for years. They ask u each year which meetings we would like to have t requesy various sconferences and meetings. mosy pothe orgs do th e same, but a little accolade here for PDF - they get it - they really do. Thank you, PDF!

Peggy

OOPS! Paula beat me o posting a eply to Greg D. sorry

Hello all! Paula, Peg, and Paula's daughter were all beatutiful. My husband Ed and I were also at the Conference. We overlapped one day and were there ourselves one day. Although not as experienced as Paula and Peg, I think we did a good job getting the word out. I live in the Chicago area and was a Graduate of the Clinical Research Learning Institute. PDF picked up the tap for the hotel for the 1 night and we chose to take care of the train,bus,etc. Not only did we hand out information, discuss patient advocacy, clinical trials,
what's new in Research, ....,but also explained the way trials are done in the US. One lady from another country asked why on earth would I be in a clinical trial? I think she thought I had mental problems until I explained that trials in the US are looking for a cure, neuroprotectine, and to improve our quality of life. In her country, they do clinical trials primarily with terminal patients. So many people had relatives with PD and were thrilled to see people with PD actually participating as advocates in such a public setting. They didn't say that exactly, but mentioned their relatives stay home alot and do very little. It was a great experience and I would definately love to participate again.

Ii didn't know your forum name, and now I know you and Ed. You were a lovely couple, and thanks so much for helping out this year!

That was an interesting story about the lady whose trials are only done for terminal patients. I guess we would qualify in end-stage PD. It sounds as if they do some testing that might put your life in jeopardy.
Thank goodness we don't opeate that way. We look for the "healthiest" people with PD. How else would they know if it was PD or the terminal illness symptoms that improved or got worse?
Peggy

Yippie Yahooooo! and the dream comes to life! way to go; way to go; WAY TO GO!!