Hi! My name is Jeri and I was a member here for several years under the name TickledPink. Some of the older members might remember that I was sharing my clinical trial experience in the early days of the TRANSFORMS trial for Gilenya back in 2007.
For those who don't know me–or don't remember me– I am female, 52, diagnosed with RRMS in 1999. I blogged my clinical trial so I could share what it's like to be in a study from a patient's perspective.
Since that time, I spent 1.5 years as a patient speaker for Novartis on behalf of Gilenya traveling around the US sharing my story with groups of MS patients.
Because of my blog I have been invited to speak at several conferences to address the emerging role of social media in clinical trials and how to make trials more patient-centric.
I took on a new job 3 months ago writing for Healthline(dot)com as their weekly MS News contributor. I love it very much and have learned so much while writing the pieces.
I'm really excited about all the research that is being done for MS. It seems like they learn new things every day and have come so very far since my diagnosis.
I'm a firm believer in patients being their own best advocates when it comes to their health. And my own experience has made me realize just how much broader our options are when you take clinical trials into consideration. I got a 4 year jump on the everyone else with Gilenya because I joined the study. (However, I realize everyone's experience is different and it was the luck of the draw that I got the real medication all along AND that I benefited from it.)
Because of this passion I have for patient empowerment, and realizing there were few resources at my disposal when I signed up for the study, I decided to create a website devoted to sharing information about clinical trials from a patient perspective. It's just starting out, so I have more vision than content, but you are welcome to visit.
partnersinresearch(dot)org is a place to learn about research from a patient perspective, find out what's in the pipeline, and have a voice before big pharma in how to make research more patient-centric.
Anyhow, that's me in a nutshell and I'm happy to be back on MSWorld.
Interesting fact: Dr. Daniel Kantor, who contributes to MSWorld and has shared many videos, is the doc who originally got me into the TRANSFORMS study. He's a great guy and knows his stuff when it comes to MS.
For those who don't know me–or don't remember me– I am female, 52, diagnosed with RRMS in 1999. I blogged my clinical trial so I could share what it's like to be in a study from a patient's perspective.
Since that time, I spent 1.5 years as a patient speaker for Novartis on behalf of Gilenya traveling around the US sharing my story with groups of MS patients.
Because of my blog I have been invited to speak at several conferences to address the emerging role of social media in clinical trials and how to make trials more patient-centric.
I took on a new job 3 months ago writing for Healthline(dot)com as their weekly MS News contributor. I love it very much and have learned so much while writing the pieces.
I'm really excited about all the research that is being done for MS. It seems like they learn new things every day and have come so very far since my diagnosis.
I'm a firm believer in patients being their own best advocates when it comes to their health. And my own experience has made me realize just how much broader our options are when you take clinical trials into consideration. I got a 4 year jump on the everyone else with Gilenya because I joined the study. (However, I realize everyone's experience is different and it was the luck of the draw that I got the real medication all along AND that I benefited from it.)
Because of this passion I have for patient empowerment, and realizing there were few resources at my disposal when I signed up for the study, I decided to create a website devoted to sharing information about clinical trials from a patient perspective. It's just starting out, so I have more vision than content, but you are welcome to visit.
partnersinresearch(dot)org is a place to learn about research from a patient perspective, find out what's in the pipeline, and have a voice before big pharma in how to make research more patient-centric.
Anyhow, that's me in a nutshell and I'm happy to be back on MSWorld.
Interesting fact: Dr. Daniel Kantor, who contributes to MSWorld and has shared many videos, is the doc who originally got me into the TRANSFORMS study. He's a great guy and knows his stuff when it comes to MS.
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