I was invited by Gerry Matczak from Lilly Clinical Open Innovation to write a guest post for their blog. They suggested around 1200 words. HA! Apparently they didn't realize how hard it is for me to get to the point. Family has learned to tune me out after the first five minutes or so, but fortunately for me, Big Pharma wants to hear what a clinical trial patient has to say. They gave me free range and let me talk until I was done. Fair warning: It ended up being over 2200 words.
Read it here on their blog:
http://portal.lillycoi.com/2013/01/08/meet-subject-0008-a-patient-perspective-on-clinical-trials/
Thanks so much to Gerry and Lilly COI for making this happen. Giving me a platform to reach those who might make a difference in the design of clinical trials is a priceless thing indeed.
Thanks also to Novartis for conducting the TRANSFORMS trial for Fingolimod (now Gilenya) and allowing me to take part in this massive study. I owe my very quality of life to you.
My story of being a hypochondriac, an MS patient, and a guinea pig. NOTE: After 16 years on Fingolimod, I'm starting my self-designed study to taper off the drug while avoiding the now well-documented "rebound relapse" phenomenon. I'll be writing about my journey on SubStack and you can find it here: https://farewellfingolimod.substack.com/
Wednesday, January 9, 2013
The Conversation with Big Pharma About Research Continues
Tuesday, January 8, 2013
Out with the Old, In with the New
As most of you who have been following along already know, I'm a Gilenya Guide, or patient speaker for Novartis. I travel around the country and share my story with groups of multiple sclerosis patients to raise awareness of the disease and treatments available. I have agreed not to blog those experiences in detail, but I do like to share dates/places where I'll be speaking.
Saturday, January 12, 2013
2:00 PM ET
Presenters:
Megan Barrett, ARNP, BSN
Jeri B
Lafayette Park Center
501 Ingleside Ave, Tallahasse, FL 32303
Tuesday, January 15, 2013
6:30 PM CT
Presenters:
Catherine Meyer, RN, MSCN
Jeri B
Lalo's
1432 Waukegan Road, Glenview, IL 60025
In Atlanta on my birthday, 1/31/13
Thursday, January 31, 2013
6:30 PM ET
Presenters:
Robert Gilbert, MD
Jeri B
Brio Tuscan Grille Buckhead
2964 Peachtree Road NW, Atlanta, GA 30305
Out with the old
Last year was a great year for patient advocacy! I spoke around the country at Novartis events as well as non-Novartis events, advocating for those with MS as well as ePatients, clinical trial patients, and just patients in general.
It was a great start to what I hope will become an even bigger crusade in 2013.
The Disruptive Innovations To Advance Clinical Trials Conference - September 2012 |
My Part @
|
In with the New
I have several events scheduled already this year. As a Gilenya Guide, I will be speaking on the following dates:
This Saturday 1/12/13 in Tallahassee, FL:
Saturday, January 12, 2013
2:00 PM ET
Presenters:
Megan Barrett, ARNP, BSN
Jeri B
Lafayette Park Center
501 Ingleside Ave, Tallahasse, FL 32303
Tuesday, 1/15/13 in Glenview, IL outside Chicago:
Tuesday, January 15, 2013
6:30 PM CT
Presenters:
Catherine Meyer, RN, MSCN
Jeri B
Lalo's
1432 Waukegan Road, Glenview, IL 60025
Thursday, January 31, 2013
6:30 PM ET
Presenters:
Robert Gilbert, MD
Jeri B
Brio Tuscan Grille Buckhead
2964 Peachtree Road NW, Atlanta, GA 30305
and I have 2 non-Novartis events coming in February and March:
One is in San Francisco on February 26-28, 2013:
eClinical Pharma Decision Making
The other is in Philadelphia, PA on March 20-22, 2013:
C.R.O.W.N.
2nd Annual Clinical Research Operations & Worldwide Networking
I can't wait to get this year going! It's going to be a great year for patients everywhere. I can feel it.
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