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07-26-2013, 08:03 AM | #1 | ||
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Magnate
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"Thanks for this!" says: | Conductor71 (07-27-2013), indigogo (07-26-2013), lab rat (07-27-2013), RLSmi (07-27-2013), Stand Tall (07-26-2013), Tupelo3 (07-26-2013) |
07-26-2013, 08:12 AM | #2 | |||
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Senior Member
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I believe Perry Cohen is in this study? Does someone know for sure?
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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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07-26-2013, 09:01 AM | #3 | ||
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Magnate
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07-26-2013, 10:09 AM | #4 | |||
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I should have looked at the article first!
Perry's a very special patient. A loooong time advocate; he started the Parkinson's Pipeline Project, and has been holding out and staving off other treatments (like DBS) that would make him ineligible for a future GDNF trial - if one became available. Fortunately for him, one did. He is literally banking his life on this opportunity. All PD patients owe Perry a ton of gratitude for his activism and service on our behalf.
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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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"Thanks for this!" says: | Bogusia (07-26-2013), Conductor71 (07-26-2013), crimsoncrew (07-26-2013), lab rat (07-27-2013), lindylanka (07-26-2013), olsen (07-26-2013), Perryc (02-06-2014), soccertese (07-26-2013), Stand Tall (07-26-2013), Thelma (07-26-2013), Tupelo3 (07-26-2013) |
07-26-2013, 12:28 PM | #5 | |||
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Senior Member
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I signed on for this too...same rationale as Perry. I head to the NIH on August 5th for screening. They are pretty comprehensive includung the U Penn smell test, genetic workup, and a DATscan. From my viewpoint, even if I do not qualify for the trial, I will have the most advanced diagnostic tools out there to confirm my diagnosis. Not a big doubter, but I have some atypical things, so I really wanted to be sure before I went with any brain invasive procedure. The best part is that they do ot make us endure a drug washout! Given they pay for everything for me and a caregiver, this is almost a mini vacation.
Hopefully, I make the cut and can share what happens since there is no control group. Laura |
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07-26-2013, 03:20 PM | #6 | |||
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Senior Member
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Laura, thank you for participating in the trial--and I send lots of hope and encouragement.
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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"Thanks for this!" says: | Conductor71 (07-27-2013) |
07-26-2013, 04:14 PM | #7 | ||
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"Thanks for this!" says: | Conductor71 (07-27-2013) |
07-26-2013, 05:29 PM | #8 | ||
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Member
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Quote:
Thank you for sharing Laura! This is a hope for all of us, cannot wait to hear good news from you... Also there is another GDNF trial planned by MedGenesis for the Phase II and phase III - Phase II Clinical Study 6 patients successfully completed surgery and infusion in pilot study Main Phase II study with 36 additional patients due to start Q3 2013 Full efficacy and safety data readout in 2015 The Phase II study is being conducted in Bristol, England, and is supported by significant direct funding to the site from Parkinson’s UK. Phase III Clinical Study (with partner) Two multi center studies Approximately 180 patients per study Delivering 2018 marketing authorization |
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07-26-2013, 05:35 PM | #9 | ||
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"Thanks for this!" says: | Conductor71 (07-27-2013) |
07-26-2013, 05:38 PM | #10 | ||
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Junior Member
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Admire your courage Laura. All the best.
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"Thanks for this!" says: | Conductor71 (07-27-2013) |
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