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-   Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)
-   -   MJFF needs a few volunteers (https://www.neurotalk.org/parkinson-s-disease/152646-mjff-volunteers.html)

Debi Brooks 06-27-2011 01:23 PM

MJFF needs a few volunteers
 
MJFF is looking for up to 5 people to participate in a phone interview. We are embarking on a new project to improve our online brand and presence to better meet the needs of the Parkinson’s community. To help us we have hired an innovation and design consultancy that will be conducting the discovery interviews.

There is no requirement for prior participation with the Fox Foundation and in fact we would prefer to talk with individuals with whom we do not have a current relationship. We would like to learn from you.

Please let me know if you would be willing to contribute your time and insights. I will then connect you with the team to find a time that is convenient for you over the next week or so to participate in the interview. Thank you in advance for your help with this very important project.

Debi

Lexiegirl 06-28-2011 11:37 AM

Debi,

I would very much like to contribute my time and insights to the MJFF. I was diagnosed with PD 3.5 years ago, but have had symptoms for about 20 years. I am very proactive about my disease. I exercise each day, take supplements, also LDN and now Lithium 20 mg. My disease is very well controlled with the things that I am doing and I would love to have the opportunity to share my successes and contribute to this very important organization in any and every way that I can. I am currently on SSDI because of my PD so I would have the time to devote to this project. I am 62 years old.

Lexie

Nan Cyclist 06-28-2011 02:32 PM

Debi, My answer is much the same as Lexie's, except I'm 65. Diagnosed 3.5 years ago and the disease is under control through cycling, so much so that I've cut my meds in half and will be climbing Mt. Kilimanjaro with a team of people with PD and MS. I also like to share my story. I'll be available for the next week and then off to Africa..

ol'cs 06-28-2011 09:24 PM

yah, why not, i've..............
 
put my 2 cents worth around here, since the days of John Lester's Braintalk, then the rearrangements to it's present incarnation of this world class sick peoples bloggarama. I gotta say, any forum where the problems that often isolated and sick and lonely PWP, can be aired, is a good place to come and share, and as long as somebody is "out there" , someone who one can believe and trust will give them something useful to guide them through the maze of changes that they face, and it's USED, then , it's worth the effort. There are a lot of knowledgeable, experienced people here, people who really understand what you are going through with PD, or any horriblre affliction for that matter. This type of forum is often the only place people like to hang out at, people who are very ill, and have nobody, nowhere else to share their thoughts with.

goodvibes 06-29-2011 04:47 AM

Hello, Debi. I am new here. I would be willing to participate. I look forward to hearing from you.

goodvibes 06-29-2011 04:58 AM

Hello, Nan. I am new here and this is exactly the kind of info I was looking for! I am also quite active and not ready to let PD be the boss of me. I would like to know more about your travels and cycling. I'm kicking up my cycling and looking to join more rides-PD, MS, ALS. Would be great find someone to ride with. Also, how did you find the group for Kilimanjaro? Sounds wonderful!! I spent 2 weeks in S. Africa volunteering on a big game reserve and can't wait to go back, plus lots more places to see and things to do! Thanks for getting me excited to start my day!

Debi Brooks 06-29-2011 10:52 AM

trying to connect
 
Goodvibes,

I tried to send you a private message with no luck (I'm not so good at navigating this site!)...can you PM me and then I can share more information about this request?

Thanks, Debi

goodvibes 06-29-2011 02:13 PM

I apologize, Debi, but I can't seem to crack the code on the PM....where the heck is that icon???!! I reset my acct, so you should be able to email me now...I hope. Look forward to hearing from you.

bandido1 07-01-2011 04:27 PM

if you think my profile fits you may vet me through lindylanka,paulaw,or pegleg for a trustworthy opinion. good luck on the project. bandido1 aka bob c

ol'cs 07-02-2011 06:14 PM

As far as i'm concerned............
 
MJF doesn't have any interest except something that will give him headlines. Canada gave the world another Fox, Terry Fox, who contributed to his cause, much more than MJF did to his. This is because MJF, by his Stardom can be like any rich and famous person. Terry was an unknown who had one leg and cancer chewing away at his body, and had to be pulled from his task of running across the continent, ie., the support and research into the medical field of cancer because he was too ill, and died shortly after. At least part of the money that Terry raised for cancer research, filtered directly to those whose lives are stricken by horriblre disease, much like the way Marlo Thomas set up St.' Jude's hospital, concentrating on leukemia in children.

If MJF had been listening to us , he would have gotten the impression that 70 million dollars just buys the researchers who can smell personal gain from their association with a "big name", and by keeping a "hand's off" approach, he probably has seen hundreds of thousands of bucks worth of his hard won contribution to PD, end up as nothing more than irrelevant "publications" that won't ever get those damn cells that we need, into our heads!!!!!!!!cs Thankx anyway Mike.


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