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02-04-2009, 05:56 PM | #1 | ||
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First, let me introduce myself...I'm Debi Brooks and I'm co-founder of the Michael J. Fox Foundation.
While I've been a interloper on this site for years (and have found it informative and motivating) I've just signed up today to be a member. I look forward to playing a more active role in neurotalk. I can say that I'm not an expert on many of the topics and threads raised here but I'm very interested in them...I also appreciate that there is a degree of input that I can comment on from time to time. I will do my best to add useful and accurate information. My hope that it will be well received. I signed up today with the specific goal of reminding folks of our upcoming roundtable webcast next week. (Original thread back on 1/14). I see so many questions, technical and otherwise, raised here regularly and even occasionally some queries that call out MJFF actions/research etc...So, I wanted to be sure that interested folks know that our research roundtable series (something that we've been doing for the past six years in cities around the US) is now set up to reach a wider audience. The format is a combination of presentations (MJFF overview and key discussion topics) from our staff and select researchers and clinicians, followed by a Q & A period. The whole roundtable generally goes 2 hours and while many topics are raised and discussed, we never get to everything. Hopefully, over time we cover the most pressing and relevant topics of interest to the patient community--at least we try! I've cut and paste the information from our web site below so you can register to particate (either in person in Atlanta or via the web). I hope you can join us. Debi REMINDER... Registration Now Open for February 9 Virtual Research Roundtable Research Roundtables hosted by The Michael J. Fox Foundation in various locations across the country bring patients and caregivers the latest news, advances and breakthroughs in PD research from the world’s top neuroscientists. Starting on Monday, February 9, a series of three 2009 Research Roundtables will be Webcast live to allow even more individuals to hear from our expert panel and submit their own questions on PD and the state of research toward a cure. Register now! The February 9 Virtual Roundtable will be Webcast live from Atlanta, Georgia. The program will feature MJFF Co-Founder Deborah W. Brooks and Vice President of Research Programs Todd Sherer, PhD. During Q&A, audience questions (both from attendees in the room and in the Webcast audience) will be addressed by MJFF’s chief scientific advisor, Eugene Johnson, PhD; senior medical advisor, Irene Hegeman Richard, MD; and Executive Scientific Advisory Board member Susan Bressman, MD. Log on at 6 p.m. (U.S. ET) on Monday, February 9, to view the presentation and submit your own questions to our panelists. If you cannot join us in real time, a recording will be available on our Web site shortly after the event. Either way, you’ll hear the latest PD news from our world-class research staff and scientific advisors. Virtual Roundtables also will be Webcast in June and November. (Detailed date and time information is posted on the MJFF website). We look forward to having you join us for one or all sessions! Virtual Roundtables are made possible by a generous lead gift from Solvay Pharmaceuticals, Inc. Register now to attend the first Virtual Research Roundtable on February 9 |
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"Thanks for this!" says: |
02-04-2009, 09:53 PM | #2 | ||
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In Remembrance
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Debi,
Welcome to the forum....you are a sight for sore eyes. I am absolutely thrilled to have your outstanding and fully functioning brain in this forum. Thank you .....you give me hope... not just about the future of PD research, but in mankind. I have confidence in you; and admire your courage and willingness to do something personally risky. I plan to take full advantage of everything you bring to the conversations. Well you made my day....I think my shoulders just relaxed! They don't very often. I could go so far as to say I feel great! paula
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 02-04-2009 at 09:54 PM. Reason: I'm registered and looking forward to the webcast...another thank you. |
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02-04-2009, 10:42 PM | #3 | |||
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Magnate
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, Debbie.
Happy to see you here and that you have officially pulled up your chair up to our table! I hope you will also have some time to see the Clinical Trials forum linked to at the topic this list. Again, Welcome
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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02-04-2009, 11:10 PM | #4 | |||
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Senior Member
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Debi,
You are a most welcome addition. Thank you for not just visiting, but for becoming an open member of the group. Jean B
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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02-05-2009, 01:18 AM | #5 | ||
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Welcome Debi. It is nice to have a representative from one of the national orgs in what has traditionally been the patients' house. Your involvement will go a long way toward improving communication by providing a perspective we do not always get to hear, but desperately seek.
Sheryl Jedlinski www.pdplan4life.com |
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"Thanks for this!" says: | DaleD (02-05-2009) |
02-05-2009, 08:31 AM | #6 | |||
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Senior Member
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Let me add my appreciation to your decision to "sit around the kitchen table" rather than be in another part of the house while we discuss issues. I give Paula the credit for having you here. She's persistent!
I also very much enjoyed the Fox Foundation contribution in the story on Frontline's story of Dave Iverson the other evening, in "My Father, My Brother, and Me." The show can be viewed and downloaded at this link: (I believe I even got a glimpse of you in it). http://www.pbs.org/wgbh/pages/frontl...7&continuous=1 Debi, your joining NeuroTalk validates that the Fox Foundation IS listening to the patient (among other things you have done recently), Welcome aboard! Peggy |
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02-05-2009, 05:47 PM | #7 | |||
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Magnate
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"Listening"...Amen!...and thank you MJFF!
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You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller |
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02-05-2009, 10:44 PM | #8 | |||
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Senior Member
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Thanks for coming on the forum Debi. It really is an incredible action, and greatly appreciated. It's good to know people of influence are listening.
Recommendation for all forum participants and readers - watch the Fox research roundtable on February 9. I went to one last month in the Seattle area and came away impressed with the work being done on our behalf, the level, depth and breadth of thinking and conversation taking place, and satisfied that patient concerns are their concerns. Parkinson's is absurdly complicated; seems like the more we learn the less we know. I'm glad we have the Fox Foundation and others asking the right research questions and trying to figure out the complex science; I'm glad we have each other to figure out how to live with the complexities PD throws at us every day; and I sure am relieved and happy to know the lines of communication are open and flowing both ways. Wow!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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02-09-2009, 08:24 PM | #9 | ||
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I participated in the MJFF round table forum this afternoon via the internet. It was excellent. I especially liked their format and the time allocated for questions from the audience. This is a great opportunity for PD patients to get to know the researchers, physicians and to understand their side of the story. I must say that the panel, as well as the experts in the field did a nice job of that. Thanks to MJFF for bringing science to the street (not sure if it sounds ok but the phrase "bench to bedside" is already taken!!)
Did anyone else participate, if so what are your thoughts? Thanks Girija Quote:
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02-09-2009, 09:40 PM | #10 | |||
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Senior Member
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I signed up with all intention of attending, then got tied up with family matters and forgot - GRRR! Bt I believe it will soon be available online.
Peggy |
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