The following blog post is by Jeri Burtchell.
Jeri is a renowned patient advocate, with first-hand experience participating in clinical trials. Her ideas, passion and willingness to share via her blog and in speaking engagements help to clarify how clinical research works, its value, and where there needs to be further focus on the needs of the patient.
The opinions expressed by Jeri are her own, and do not necessarily reflect those of the Lilly COI Team.
In mid 2007 I laid on my back staring at the ceiling, trying to talk myself out of suicide. After eight years of battling multiple sclerosis I was sure there was no hope of ever seeing an improvement in my quality of life. The thought of my family’s certain sorrow over my tragic death forced me to find an alternative. I pushed myself to make one last effort at self-advocacy and hopefully change my life. I was ready to entertain drastic measures.
Allow me to introduce myself. My name is Jeri Burtchell, but from 2007 until 2011 I was also known as Subject #0008. More…
The following blog post is by Jenny Dwyer.
Jenny and her husband Pat live in Seattle, Washington. Jenny is an amazing caregiver to her husband, who has been afflicted by ALS, and has become very well known in the ALS patient advocacy community. After meeting Jenny at the ALS Therapy Development Institute Leadership Summit, we invited her to share her caregiver perspective on clinical trials and drug development.
The opinions expressed by Jenny are her own, and do not necessarily reflect those of the Lilly COI Team.
My husband, Pat Dwyer, was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS (0r Lou Gehrig’s disease) 7 years ago. Pat was involved in the commercial fishing and marine industry in Alaska and when he first started to lose feeling in his left hand, he thought years of working in the bitter cold were finally getting to him.
However, the strength in his hand began to decrease soon and eventually he started to experience twitches in his upper arm. At a regular annual checkup – our doctor referred Pat to a neurologist. After a few rounds of testing, Pat was diagnosed with ALS.
The following blog post is by Mark Delong.
Mark DeLong leads the information technology group at Duke University’s Institute for Genome Sciences & Policy. He is particularly interested in harmonizing life sciences research processes with information technology and in emerging computation technologies including specialized computer processors, “cloud” computing, high performance computing, and development of high-throughput analysis systems. He and his group strongly advocate use of open source and open data. He studied philosophy as an undergraduate, and earned his PhD from Duke in English medieval and Renaissance literature and culture.
The opinions expressed by Mark are his own, and do not necessarily reflect those of the Lilly COI Team.
SPREADING THE WORD OR PREACHING TO THE CHOIR?
On Saturday evening after the third Sage Congress broke up, I wandered down to the Hyatt’s restaurant to mix with other stragglers and relax a bit. I met Jerry Matczak and Tom Krohn from Lilly Clinical Open Innovation, who had the same thing in mind.
“What did you think?” Tom asked, prodding me for a judgment of the event.
I had been wondering exactly what I thought ever since we wrapped things up that afternoon, and I paused and said, “I think it felt a little like a revival.”